I'm a newbie and I'm not sure how to explain CFS to my friends.

[KatyMaxwell]

Hi, I'm new here and I've only just been diagnosed about a month ago and I've been suffering from prolonged fatigue and muscle pains for at least 2 years now. I am 13 and have been back and forward to paediatricians and physios and my GP for ages and finally somebody knew what was wrong with me. They think it was caused by a glandular virus I had about 3 years ago that I never fully recovered from. I'm not sure what to do to help my friends to understand what it is. I know I'm young and most of you are adults but I just wanted to ask questions in my own words. The help would be really great. Thanks.

[ALKT]

please check the pheonix rising website because it has the largest number of people with M.E /cfs you will find all the up to date information and medical research info plus use full guides. best wishes.

[KatyMaxwell in reply to ALKT]

Thanks

[myhealthneeds]

Hello Katy,

Good to hear from you but sorry that you are feeling so ill. Whatever you do, do not try to do too much or take part in sport or things that cause you to become exhausted. This, in the long term, can only make you worse.

To explain to your friends. there is quite a good thing on the internet under Patient.co.uk under Chronic Fatigue Syndrome (ME). Post Viral Syndrome Print/Patient.co.uk.

Some of this is quite good but under Specific treatments for the treatment of CFS/ME please beware as it is still quoting Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT). It quotes a study done in 2011 and last year this study was found to be much less accurate than it had claimed (after a lot of trouble since the study results came out). The goal posts were changed in the middle and this made people who had entered the course appear to be better at the end, when in fact they were less well but appeared from the criteria to have improved. Also, it says that the people used in the study were not bed bound, so it was aimed at people who could travel to take part in the trial and people who had CFS. But CFS can be a symptom of many different things, not necessarily connected to ME. One can be exhausted for many different reasons and the study didn't differentiate between these.

The two treatments they suggest, CBT and GET can be useful in very careful ways. However, it is difficult to get these treatments and if you do, to get them from a person who really understands ME and accepts it as a genuine physical condition rather than a psychiatric/psychological condition. If the therapist thinks that the person is 'not really ill' or is 'believing that they are ill', they could use CBT to rid the person of 'wrong thought processes'. But if you have a therapist who understands and cares, it can assist the person to accept themselves, relax, feel supported and understood. And the GET could be helpful if there is a baseline for the individual and the person is encouraged to do a little and know when to stop - PACING (as an extension of GET) is something that many people with ME find helpful, where the person is discouraged from putting their body under pressure when they feel a 'little better' and then collapsing for days or weeks! So doing something and stopping well before one is exhausted. The kind of behaviour that tends to happen is described as BOOM and BUST: 'I feel better today so I will go to school all day and I will join in with all the activities while I have the energy' - but then collapsing into bed and staying there for the rest of the week, the month or more!

What part of the Country do you live in? I'm in South Wales. You can email me if you like: [e-mail]. We can support people wherever they live however. Do you have good support from your school? Are they letting you either go in late or leave early or allow you to lie down in break times or when you need to rest? Do they allow you to have time off from school, help you to catch up with work, or work from home?

Here, we went to a meeting with a child's school to explain the condition to them and arrange for him to have the time he needs. Originally they were stating last October that they wanted to increase the time he had in school day by day, so that he was back in school full-time by the end of term in December! That was nonsense, as he could not wake up or get up early and when he had made the effort to get to school he was exhausted by the effort of just getting there and ready and collapsed! They saw sense and now he is treated much better and allowed to do what he can, when he can. His health is far more important than his education at this stage. These days one can continue to learn as an adult whereas if you mess your health up and become disabled by ME, then the rest of your life can be on hold. I know how hard it is for a young person though, as you want to do things with your friends and they expect you to do what they can do without any problem.

I look forward to hearing from you.

Miriam

[KatyMaxwell in reply to myhealthneeds]

Sorry I think I made it sound worse than it is. I can still do sports and activities just not the extent others can. I am still going to to school every day (give or take) but I appreciate your concern. Thank you for the tips anyway.

[Zebra68]

Hi Katy

Sorry to hear you're not well. ME is a pretty crappy disease, but you can improve with it, as long as you look after yourself. The best thing you can do is learn to listen to your body. Only you know how tired you feel or how much it hurts, so you need to listen to what you need.

I've written a few things below. Sorry its a bit long. If it's too tiring to read, get one of your parents to read it to you.

Trying to explain this disease is not easy. People don't realise how ill you are and how serious it is because you look so well. If any of your friends have had a serious illness, glandular fever or proper 'flu (not a cold), it might help. Ask them to remember what it was like when they were at its worst, when they could hardly move because of the pain or the complete exhaustion. Well, that's what it's like for you every day. And instead of it taking a week or two to recover, it takes years. This is because your body thinks it's got the 'flu, so all your energy is going into fighting that. If they've not had anything like that ask them to imagine not getting any sleep for 3 nights. (Perhaps tgeyd like to try just missing 1 next school holidays) That's how tired you are all the time. You dont sleep prpoerly when youve got ME. Sleeping is a bit like putting your phone onto charge every night. Well, it's how your phone is when it needs a new battery and the Internet is running super slow. You try to Google something. You spend 5 minutes watching the swirly circle thing then your phone dies. You put the phone onto charge again but it's one of those you can't use when it's charging. You try to Google again and the same thing happens. That's ME.

Now to helping you. Pacing what you do does help, but it takes a bit of getting right. The first thing you need to do is working out what you can do without making things worse or making you feel tired. This may even be something very small, like sitting up in bed. What you do need to remember is that your body uses energy not just for moving about, but also for thinking and concentrating, eating and digesting. So you have to take these activities into account as well. Once you've worked out what you can do without making yourself tired or feeling ill, you've found your base level. This is the level from which you gradually increase what you do. By gradually, I mean over weeks or even months, the pace you need to go at. You do this by having short periods of activity, followed by rests. The length of the period of activity depends on you. It might be an hour or longer, it might be just a couple of minutes. You also need to vary the type of activity. A physical activity (getting dressed, showering, eating, walking, etc.) followed by a mental activity (computer, TV, phone, homework, etc.)

This is how I increase things. I have a laminated card with the day split into 1/2 hour chunks. So my day goes a bit like this: get up, eat breakfast, plan the day, rest for 30 minutes. Get dressed, whizz the dogs round the block on my scooter, have a cuppa and watch TV, rest. Computer, walk to the postbox, rest. And so it goes on. One hour of activities, one mental, one physical, followed by half hour rest. It doesn't always work, and I still get tired, but I know from experience that I'm not pushing myself too much as I'm beginning to get the odd day when I can do more. I will gradually increase the length of time in between the rests.

Until recently, I was pretty much bed bound, so activities were restricted to 15 minutes of colouring followed by 30 mins rest, cup of tea, rest......but I've built it up slowly.

Now, what you do for rest is important. Rest is not singing along to music, watching tv, messaging friends. It's lying down, warm and comfortable and allowing yourself just to be still and relaxed. Sometimes this is hard. I find listening to audio books or gentle music really helps, especially if I'm finding it hard to settle, which is usually a danger sign that I'm about to collapse and I really need to stop and rest. You will find your own thing.

When you're ready to go back to school, you and your parents will need to go and talk to them. You might only be able to manage an hour or two at whatever time of day suits you best. Increase this time at your pace, not theirs. A rigid timescale is unrealistic. But slowly and surely, you will get back to it. If you have problems reading, theyll need to know. Theyre going to have to give you more time for homework, exams, etc. You might need some one to one to help with the concentration and comprehending of what youre reading. Its not tgat youve suddenly got thicker or brain damaged. Your brain is not working properly because of tge disease. Avoid sports, though. It's not worth the payback. It might be okay again one day, but when you're ready.

You will get there and things will improve, but don't expect over night recovery. It takes time. To give you some hope, a friend of mine's daughter was about the same age when she developed ME and was completely bed bound for the 6 months. Now, 6 years later, she's at university studying hard and leading a pretty full life. She still has to take things steady, but she's pretty much better.

Sorry for the essay. Hope it helps. Good luck xxxx

[KatyMaxwell in reply to Zebra68]

Sorry if I made it sound as bad as you think. I worded it wrong. I still do my activities but not to the extent others can. I can complete daily tasks it is just that my friends don't understand. Thanks for the tips though they were helpful

[Starfishlaurajayne]

Hi Katy, ME/CFS affects people in different ways and to different extents. I've heard an analogy of it which compares your body to a car with the alarm going off even though nobody's trying to break into it. Whatever triggers your ME/CFS your body is misinterpreting as something your immune system has to fight. This trigger can be too much mental, emotional or physical activity and even too much incoming stimulation such as being in busy places with lots of light, noise or having to concentrate for long periods of time. So the alarm system is triggered and your immune system (thinking it has to defend itself) sets off the alarm, which could be joint pain, achey and/or weak muscles, fatigue, headaches, sore throat, bad stomach... pretty much any of the symptoms associated with your condition. Your immune system is overreacting, so the threat isn't there anymore (for you this may have been your previous Glandular fever), but your body is still stuck in the old response mechanism of setting off these 'alarms' in your body (your symptoms) in order to make you rest so it can recover. One thing I will say about this analogy is that even though the alarm is going off but no one's trying to break in (so the threat isn't real), your symptoms are very real.

Another one I've heard of is that if your body was a boat carrying cargo, then too much cargo would weigh it down too much and it would begin to go under water. Imagine this cargo includes many boxes which resemble everything your body is currently trying to cope with. If too many boxes (demands) are put on the boat (your body) at any one time, then the boat will start struggling to stay afloat (cope with daily life) and risk sinking (getting ill/ symptoms overtaking you). These boxes may include cargo such as a box labelled 'stress', another labelled 'worry/anxiety', another 'physical exertion', another box 'allergies'. If you were just about coping with those 4 boxes aboard you boat, but wouldn't manage with 5, and you then caught a cold for example, then another box labelled 'fighting a cold' would be placed on your boat, making it 5 boxes and the boat starts sinking.

Some people can cope with more boxes on their boats, some can't cope with as many. Also boxes come in different shapes, sizes and weights. The box labelled 'stress' for example might be small and light one day, it might be a bit heavier the next day if your deadline for homework was getting nearer and you were struggling to complete it on time, and the box might be huge and heavy another day if you had a big argument with somebody who really upset you. These are just examples, and everyone's boxes have different labels and are different weights and sizes, so you have to be in tune with yourself to know what yours are each day.

Listening to what your body is trying to tell you is really important because if you start noticing some warning signs that you're starting to feel worse, you then have the opportunity to rest instead of fight it/ push through it. Resting, relaxing, eating, drinking, etc. will all help you to refuel your energy levels and go back to your daily activities.

I hope any of what I've said helps. All the best.