Myalgic Encephalomyelitis (ME) and Chronic Fatigue Service (CFS)

I used to commute in London into one area and just walking to the tube station or walking down to the shops and walking back again actually started to get quite effortful and before that I was I was jogging three times a week I'd done the couch to 5K I did a lot of swimming and stuff and I was finding that I just, I couldn't do that and but it was just the kind of the normal walking that used to be I wouldn't think about that was becoming problematic I just felt like things were much more difficult. It was hard on my heart and lungs I felt it felt more of a pressure, I felt out of breath more and of course I was someone that was actually quite active so that wouldn't have happened normally for me at all, in fact I like doing aerobic exercise and all that kind of stuff.

It's a state of being where one feels completely and utterly depleted of any energy whatsoever, so people do, do describe it in different ways because it is different for different people in terms of the severity but some people say it's like the plug's been pulled out other people will say, well one lady described it to me really poignantly and said it's like my blood has been replaced by lead, um someone other people say it's like you're covered in sandbags or you feel like you're covered by cement.

It's just that inordinate effort to do even the simplest of things.

Often people will just describe it is that really full exhaustion physically cognitively so that sort of mental processing um emotional exhaustion as well and sometimes people have described it as kind of wading through treacle, that real kind of being hit by a bus.

There's lots of different descriptions that people use but I think it's very different to tiredness and it is that all encompassing debilitating fatigue that can affect, getting up, having a shower, going out for a walk, making a meal, going to work. So it so it can have a kind of you know a really full impact on someone's life.

So people that are more affected mildly might still be able to work, they might be able to study, they might still be able to engage in social family activities if you're more moderately affected then you might struggle to work so you might have to reduce your hours you might have to make other adjustments you will definitely have to make adjustments to your social and family life and those that are severely affected um can be housebound or even bed bound so it really does affect people very very differently.

So it can affect family life, it can affect intimate relationships, friendships and that can have a real impact on you know how connected someone is with other people so it can have a real kind of impact on a sense of isolation.

I went to the doctors quite a few times, the trouble is I don't think they knew what was wrong with me and I didn't know what was wrong with me so I had to just keep coming back because they'd say one thing and it wouldn't quite work and so would go back and try something else it was kind of a bit of a accumulation of experiences so it took a long time actually it was actually a friend who spoke to me and who had chronic fatigue who I didn't see the parallels at all because they were more ill than me, that mentioned to me said there's some of the things you you're describing really sounds like ME, have you talked to the doctor about it and I kind of didn't want that to be the case because I've seen other people that have had real limitations in their life and mobility and at the time I was still able to work and do things and I kind of didn't really want to think that that might be something that I might have to deal with. But they were right they were spot on.

I think a lot of people get mistaken with you know, chronic fatigue and then assuming that that's chronic fatigue syndrome but there is a real difference chronic fatigue can be linked to other conditions so a lot of physical health conditions can have fatigue as a symptom plus some mental health conditions such as anxiety and depression also have fatigue as as part of their symptom so although somebody might be chronically fatigued and it's impacting on their life there may be a reason for that due to another physical condition or mental health condition and if that is the cause of their fatigue it's really important that that gets checked and that blood tests are done and consultations with GPs and other specialists may be really really important. 

Once any cause or possible explanation has been ruled out then we look at making a diagnosis of chronic fatigue syndrome but there is quite a strict criteria in terms of making that diagnosis and it can take quite some time.

Usually I can definitely see an energy crash coming, I'll usually know when I'm booking too many things in that I probably will be pushing things, but if they're really nice, I might just decide to go for it.

So even this week, I'd had a really nice weekend I'd done two things which was quite a lot, they were lovely, but going out and seeing people but I knew that that would be quite a lot and then I also did archery on Wednesday and I had to I knew that it was going to be struggle to then be okay to do this on Friday so I had to cancel things for Thursday and I still actually felt pretty ill on Thursday.

Well boom and bust you can apply it to lots of different situations so it's used in in terms to demonstrate talk about the economy for example but we talk about it in terms of activity when it comes to chronic fatigue syndrome, so if you imagine in your mind's eye that you have a level of activity that you would normally do on a day-to-day basis and you can take this back to before you became unwell.

So before you became unwell you had your job, your family, responsibilities, your social life you had all of those things that you did on a regular basis that was manageable and was doable and was enjoyable and that is what we call your baseline it's a regular amount of physical, social, mental activity that you can perform on a regular basis and what happens to your baseline is that it drops considerably. 

What doesn't drop is your obligations, your commitments, your responsibilities what happens with boom and but is that people will strive to do what they want and need to be able to do they will either push through their symptoms and say I'll just do this, this is my responsibility this is what I do this is the person that everyone knows me to be.

There might be pressure from other people often it's pressure from ourselves to strive to do what we've always done because that level of functioning is no longer sustainable because our level of function is down here there's a crash we can't sustain it and that crash is this enforced period of inactivity and that might last days, it might last weeks it might last hours, it really really does depend.

I think the take-home message about boom and bust is that it becomes a vicious cycle it, perpetuates and and people often feel propelled to do more when they feel slightly better out of guilt out, of expectation from others, expectations of themselves but it really is not the way forward in terms of managing chronic fatigue and chronic fatigue syndrome.

The way forward is to recognize those early warning signs recognise when you're going beyond your baseline and to stop then recharge and then go back again to that activity, stop and recharge so that your baseline becomes more of a a wavy sort of concept, to what you can sustainably manage activity-wise in the long term not just in the short.

I know quite a lot of about stress theoretically from just my background and my education and also from experience like everyone else in the world who has stress for me and my fatigue it's, it's like it condenses the fatigue and amps it up basically so I described it to a friend and colleague that it's, I don't know if you ever seen these old French movies by Francois Truffaut, it's 'The Nouvelle Vague' where it has this like this big like view and then it go smaller and smaller and smaller into the small view of the scene it's a bit like that so my abilities and my attention, my focus from being kind of at a normal level starts to condense down being able to be active starts to decrease and the more discomfort I get so it gets more effortful to move even in I I think particularly breathing as well and even standing upright for example all of this gets more and more harder and harder and harder until I literally can't do anything like I can't I need to lie down and I can't speak to anyone and I can't I just can't do anything at all.

I think it's really important to look at stress in relation to chronic fatigue syndrome because often it can play a role in sort of many years before the illness actually developed so somebody might have had and experienced quite a stressful childhood, the the actual onset or the actual trigger might have encapsulated an element of stress and then what happens on the body is that it can have an impact on the body system in terms of kind of coping with those events and what we also know about stress is that it's an exacerbating sort of factor so it can help to maintain the symptoms of chronic fatigue syndrome so it is important to kind of look at stress, we know that stress is a good thing it can help us to kind of perform and enable us to manage difficult situations and normally what happens is once that stress situation has passed the body will automatically sort of self-regulate and it will go into the opposite state which is that more relaxed, balanced state so there's two kind of systems that are working within the autonomic nervous system there's the fight or flight system that's what we call the kind of sympathetic nervous system and then there's the more relaxed which is the opposite the sort of restful state which is the parasympathetic nervous system and what research has shown with chronic fatigue syndrome is that that stressed fight or flight state is more actively switched on and it's more hyper-aroused so the smaller little daily hassles can trigger a response that's kind of out of proportion with that and it will stay switched on so it won't sort of self-regulate itself as optimally as it should.

I had a very small dog that walked at very slow pace and like to stop and I would just be mindful look at the trees, look at the, you know when she stopped and then we'd walk again and so kind of yeah not push myself with that but fresh air, sunshine's always good there's loads of stuff so there's loads of stuff I I apply anyway about prioritizing things that I do need to do, things that I don't need to do managing the energy I have very much kind of also it being okay if I can't do something and coming to the point where I'm not necessarily content with it but it I accept that that's the way it is and not stressing out about that as well and I think that's been a process that's a mindset but engaging in that if things are stressful that like really I've over the years I've got to a point where I know when I'm reaching the point I just know actually that's it for the day and that's just the way it's got to be and so rather than getting really more stressed about that it's just accepting it.

So therapeutic rest is essentially a way of re-calibrating your body recharging your battery so it's not doing nothing but it's also not scrolling on your phone, watching TV, reading a book, that sort of thing. I had a lady who's who was able to recognize through discussions of of therapeutic rest that actually she wasn't actually resting she was lying on the sofa watching TV or she was lying on the sofa with her sodoku book so although on one level you know her body was resting her mind was actually still busy and what we know about supporting fatigue with chronic syndrome is that we also need to kind of really support that mental energy that people are using.

There's various techniques that you can use to therapeutically rest you can practice mindfulness, you can use guided visualizations, you can do autogenic relaxations there's a whole loads of different techniques you can use if you Google and into YouTube re relaxation or um mindfulness. I suppose the main aim of therapeutic rest is to recharge, just to give your body a break from being switched on and it's it allows those waters to kind of calm and to steal and for your body to be replenished.

So full disclosure I wouldn't say I've mastered therapeutic rest and I've been practicing it for about I don't know seven years or so I've had lots of different attempts at it so I went through a phase of using mindfulness recordings which was really nice, sometimes I'd listen to music that helped me I know for other people even listening to something might be difficult. So it's been with practice I don't do it as regularly as they it can be prescribed but I think that's okay.

You don't have to let that wave build and build and build and build and then have a crash afterwards, if you can notice what we call the early warning signs just like you would if you were driving a car and you had warning signs to say that you got to do something differently you've got to stop you've got to slow down you've got to go round and round about we encourage people to acknowledge their body's own warning signs whether that's feeling tearful whether it's feeling a build-up of exhaustion whether that's feeling sore throat, headache, nausea it can be a whole range of different physical or cognitive mental sort of signs so the the bigger the crash the more prolonged and pronounced the crash will be so if you can sort of nip it in the bud so to speak you, your recovery time will be significantly less. It's like brushing your teeth it's not something that you can do once and then hope to never get tooth decay ever again it does need to to be something that you practice on a regular basis because you'll get better at it the more you do it your your body will start to notice the effects of it and you may well even start to enjoy it.

Sleep is really important and I think what often happens is that sleep can be disruptive so sometimes people find that they're they waken in the morning and they're not feeling refreshed that's a real hallmark of kind of chronic fatigue syndrome so even though they may have being in bed kind of asleep for a number of hours they're still not waking feeling replenished. Sometimes people have noticed changes in their sleep as well so they may have maybe waking more frequently in the night and then not able to get back to sleep so there may be periods in the night that actually they're lying awake feeling irritated maybe starting to feel a bit more stressed and then it's not conducive to sort of going back to sleep.

So to compensate that they're sleeping more in the day so more prolonged daytime napping and then what can happen with that is the sort of body's body clock gets there's a there's a sort of mal-adjustment that happens with that so getting a really good routine with sleep can be one of the first things to try and kind of look at really regular wake up time regular going to bedtime trying to have a bit of a wind down time half an hour before actually getting off to sleep just trying to calm the body down so that it's conducive for sleep.

Coming so one of the nice things, again about the clinic was we had a session about communication of having chronic fatigue with your nearest and dearest and I had two of my nearest and dearest come to the session and what was lovely is they do hold me accountable sometimes so if they if they see me and they think I'm pushing it a little bit or you know I'm having a little bit too many day naps they'll actually say are do you need to sort of recalibrate a bit in so having some other people remind me is good as us I you know eventually I'll come to the same conclusion myself but it's nice to have a bit of peer support so one of the key things with trying to balance activity is to balance it with periods of rest so trying trying to plan in periods of rest interspersed with activity and that what what happens with that is that that will support the body whilst it's engaged in activity and using the energy for the activity there can be other tools that are really useful in terms of trying to minimise that tendency to sort of do too much in a day so often people will find things like planning their day beforehand so planning in the rest times but also planning in their sort of to-do list making sure that it's realistic sometimes when people are doing a particular activity they might need to pace themselves and take short breaks so minimizing the amount of time that they're on a screen for example or make sure that they move their body gently if so they're not sitting for too long, prioritizing what's important because of often we can start the day and think I've got 15 jobs to do but actually when we really stand back and look at all those jobs which ones are essential and which ones could we delegate to somebody else or which ones could we actually not do I think there can be a bit of almost a sense of kind of liberation to kind of stand back a bit and think actually do you know what I've been doing the washing up every day and actually I can delegate this to members of the family and you know share the life skills with that oh no that's the best bit about get chronic fatigue actually is just being like right I'm just not going to do as much that's actually been really good so I had to move to a location that was slower pace for various reasons and actually it suits me a lot better I've had to say no to something there's things like I used to be able to do that I just can't but it so I prioritize really important things and that's been really nice because that's kind of better quality of life isn't it actually not doing things just for the sake of it but just doing a few good things and it's actually really nice just doing less I think I like it's there's still I still get very frustrated there's still stuff that is a loss or a grief because I would like to do it and I can't but I do appreciate things being a bit simpler as well and that choice has been made for me so I make the most of it.

Unfortunately there's no real evidence out there to show that one particular diet is good for chronic fatigue syndrome there's no exclusion diets there's no particular supplements that you should be taking unless you're deficient in something you shouldn't be excluding anything from your diet and unless you you've got an intolerance to it so the advice really is the general healthy eating so five to seven portions of fruit and vegetables a day protein with every meal breakfast lunch and dinner um and water drinking plenty of water I think a little bit more specific to chronic fatigue syndrome if you've got nausea as one of your main symptoms is to eat regularly but small and small and often I suppose one of the problems with diet and chronic fatigue syndrome is meal preparation as well is trying to think of what to prepare for a meal going out to the shops and buying the stuff to prepare actually doing the preparation and then eating it when you feel ill you should definitely keep a stock of frozen fruit, frozen vegetables some people batch cook or ask other people to batch cook for them them so they've got frozen portions of food for for those days where it's just too much to be able to stand or sit and prepare something yourself seeing others and talking with others about it really helped having the occupational therapists talk about it and just be so kind and affirming was wonderful after a long period of being quite I think the word disenfranchised where you're not actually acknowledged at all made a massive difference and other things like learning how to communicate limitations rather than getting frustrated about it and not knowing how to say actually I can't do this or I find this a bit difficult in a way that's not defensive has made things 100 times easier I would say the strategy is really really really do help a lot of people to engage with their families to re-engage with work to just feel I mean somebody once said to me thank you because you've enabled me to be a functioning member of my family again which was a real accolade which is a real lovely thing to hear so these strategies need to be interwoven into your daily routine it doesn't happen overnight but we've had people that have returned to work and then been able to sustain those working hours we've had people that have been able to engage more in social activities and to start going you know doing more physical activities but yes sticking with the strategies can have a real a real benefit and actually over the long term people are able to do to get back to doing some of the things that that had been lost or had been stopped before how do I I feel about my fatigue I still find it very annoying, I think self-acceptance, acceptance of what I have and what I don't have helps a lot for me to see the good things as well as the bad things so I feel that I manage it as best I can and actually I'm very very fortunate to do as much as I can do um and for some people that you know everyone has different ranges for that um I do absolutely in some ways think it I have benefited from it as I said from just prioritizing quality of life over just doing things and whether or like it or not it's that's happened that's made me do that and that's good. 

I wouldn't say I I wouldn't if I could not have it that would be great I suppose you have to not think too much about it and and think about all the negative things associated with it and just take each day as it comes remember that when you're in your lowest points it's not always going to be like that with chronic fatigue syndrome and ME it does fluctuate so the bad days are never going to be bad days like that all of the time then are moments of sunshine there are moments of joy there are glimmers of hope and and there is hope you know recovery is is possible prognosis it's not a deteriorating condition it's not a degenerative condition it's not something that gets steadily worse over time so I I think it is possible for people to live a full and rewarding life despite having the condition learning to learning to live with it it I used a metaphor with somebody once they did find it quite helpful it's like wearing a backpack the backpack is is there the backpack is going to be with you but you can still enjoy life wearing that backpack you can still have moments of laughter and fun and happiness and love even though it's there you don't need to disregard it and and just totally get rid of it in order to have a fulfilling life one person said to me and it might sounds really strange to hear this but but she actually said that it was it was really beneficial getting unwell because it made her stop and look back and reflect on how fastpaced her life was before she became unwell and although it was quite a painful experience and a painful reflection it made her take on a different approach to the life going forward so she slowed her pace down she took took time for herself more um communicated more with others shared her feelings and her sort of thoughts with other people but also asked for help she was somebody that really struggled to ask for help and actually by talking more about her illness experience she she sort of allowed other people to kind of come in and support her and she said she wouldn't have done that before You're Not Alone I would I would just say that you've probably been braver than a lot of people have ever realized dealing with what you've been dealing with be kind to yourself not in a like Namby pambi but way but actually in a, in just giving yourself a bit of slack um as you learn things be brave as well sometimes it doesn't work straight away and that can be really annoying but it's it's okay for it to be hard as well I would say it is hard and and yeah it's okay that it is hard because it is.