Newly diagnosed and confused

Hi. I've just been diagnosed by my GP after 12 months of being very ill, could barely walk at beginning of illness. I've had tests, scans etc to rule out other illnesses. Good to have a diagnosis at last, however it's left me feeling really confused and weird about it all. Although all my symptons and the way they present point to ME/CFS, some things just don't seem to add up.

My Mum has been ill as well, but for 2 months longer than me and we have some similar symptons. Her GP has said its stress and viruses. Also, two of my children, age 12 and 16, have been ill for the last 3 months with severe fatigue and other symptoms that seem to overlap with mine. They have missed so much school and are now struggling trying to do half days. The 16 year old is trying really hard to complete GCSE work as well. They have been referred to a paediatric CFS specialist and have their appts in 10 days.

Thing is, would me and the children really all have ME/CFS at the same time, given that it's not contagious?! Or have we all had a virus that's caused it?

I was convinced that we all had glandular fever but several doctors have all said its not that.

I'm confused.

What do you think?

15 Replies

  • unfortunately m e can and does effect families all at the same time.some researchers think our genes also have something to do with with us coming down with m e .you should check out the hummingbird for m e website it has a lot of accurate information without any physco babble. also you can check out pheonix rising both site do not charge for access . pheonix rising also has the most m e sufferers as members who are enduring this disease so you can find a lot of useful information regarding pacing and up to date research into treatments not that any treatment has been found to be effective as of luck .

  • Thank you for replying. After I'd posted this I did go on the hummingbird site and read about an enterovirus thats very contagious and can cause this awful illness.

    My heart just breaks at the thought of my children having this horrible thing as well, it could ruin their lives.

    I feel so emotional atm, i think the diagnosis suddenly hit me last night like ton of bricks.

    My Mum told me a while ago that my grandma, now soon to be 99 years old!, was struck down suddenly by an illness when she was aged 53. She woke one morning with extreme fatigue and couldn't walk more than a few steps. She never recovered and has suffered the rest of her life with pains all over, headaches, etc, and severe immobility. She's had numerous scans and tests etc but never been diagnosed with anything. I'm thinking that she probably has ME and maybe there is a genetic link where some people are more predisposed to getting it if they have been exposed to a triggering factor.

    Trying to stay positive, but it's difficult, I guess it will take a while to come to terms with. I just want my old life back where everyone was healthy and active, the boys were doing so well at school and sporty, and had great futures to look forward to.

    One child is in bed, he did a full day at school yesterday and now feels Ill and the other is on the sofa, still exhausted and in pain from trying to play football at school on Tuesday. Roll on their appts with the specialist, I need some guidance on how to deal with this.

  • So sorry to hear your family story.

    The main thing I've found is to go with your own instincts - only people with ME really understand the type of fatigue ; the limitations; the way we can feel really ill yet look quite well. The school should have information about ME and I hope you find them helpful.

    We are stuck with this illness being very poorly understood unfortunately until biomedical research shows exactly what has happened to us - and others, including very many medics, finally accept that ME is a serious, episodic and relapsing organic illness.

    I really hope the CFS specialist is a great support (as they should be) to you all, as in the meantime that's the best we can have.

    If ME - or CFS as most medics prefer - is diagnosed I think most ME people learn to live "the new life" with its limitations, accepting the not good days, but knowing a better phase comes. Trying not to overdo it on these better days is the difficult thing of course.

    Do you know of the group : AYME - Assoc. for Young People with ME ? They have lots of information :

    Tel helpline : 08451 23 23 89

    Also : Action for ME -

    ME Association -

    Very best to you all.

  • Hi, We are aslo a family with ME. My daughter did half tiem schooling from 11 onwards and has just got her degree. It is hard, very hard but the faster you can adjust to life being different the more chance you have of beating this thing. THis is only my opinion of coures but If I could do my early years again I would do much , much less straight away, pacing well to give the body the greatest chance to sort itself out. Better for the boys to take 3 months off football now and get well, than risk a much longer illness. I have loads of opinions on this illness. So I will just list my top 4

    1. Save energy anyway you can. Never stand if you can sit , never sit if you can lie down. For some reason your body is not producing energy properly so do it a favour and use less. Sit on the side of the bath when you clean your teeth. Cut out anything that can be cut out and bring it back in when you are better. I used to try to go on holiday each year. Big mistake. Rest = settee or bed with just music or story CDS. Enjoy it, it is doing you good. If you are fretting about eveything that needs to be done it doesn't count as rest.

    3. Pacing has to be done in small chunks, you need to find your baseline (what you can do without feeling ill) and then slowly increase. For example I started with 10 minutes up, 50 minutes rest and slowly increased wihtin a few months I was at 20 minutes up 20 minutes rest. When I hit 3 hours up 1 hours rest I went back to work part-time which was a mistake I needed longer to recover.

    4. Education - Again small chunks. My daughter used to do 1 lesson, then the next lying down in the medical centre, then back to the next lesson. This allowed her to stay at school with all the social benefits this brings. AYME will tell you how to get your sons extra time and rest breaks in exams. Essential to give them an even chance with the other kids. If intending to do A levels plan to take 3 years to collect them rather than cram them into 2 (my daughters local college were great about this she did 2 hours a day)

    5. There is some very promising reasearch out there Newcastle Uni in this country and Jared Younger in the USA if you want to keep up to date Health Rising

    will send you emails which explain the latest.

    Stupidly long post I know but it is what I would have wnted to know at the beginning instead of spending years slowly finding it out the hard way.

  • Thank you so much for your replies. I will look into those websites. Calliepet, so sorry to hear another family going through this. thank you for your tips, I've had a year of keeping trying to do stuff as I didn't know what was wrong with me until this week.

    Fortunately I don't currently go out to work. My job has been here renovating our house and garden, but none of that has been done for 12months. There has been an improvement in the last 2 months which keeps me hopeful of a recovery, i can now cook meals most days, although often prepare it in the morning when i have more energy. And i can do a bit more housework now, but progress is so painfully slow. I can probably do about 30 mins activity now on a good day without feeling too ill, then I usually go to bed for 1 to 2 hours. Then another 30mins, then rest, and so on. I hate lying about, ive always been an ultra busy and organised person.

    Its so encouraging to hear about your daughter, shes done so well, you must be so proud. Children are so inspirational, how they manage to achieve their dreams whilst dealing with all this.

    Our school have been very good but I think that not having a diagnosis yet for the boys is making things harder. I was annoyed that the PE teacher let him do a double lesson straight off, when he hasn't done anything physical for 3 months. I know he wanted to join in and felt better at the time, but hes only 12 and just wanted to play football. The teacher should have known that he needs easing back in gently. They know he's been ill.

    I'm still hoping that they just have a nasty virus and will bounce back, but to be honest the longer it's going on the more its looking like ME. Am having difficulty getting my husband to accept it. He thinks the boys must get up everyday and try to go to school, and I think they need to rest more. It's such a fine line to know how much to encourage them and when to let them lie in bed .

    It's hard when it's a family with ME, you're trying to look after yourself and worrying about and looking after you're Ill children as well. In fact, I had a relapse when the children were first ill in November, because of the worry I guess. And the part days at school mean more driving around dropping off and collecting.

    Generlly i do feel more more positive and less weepy today. Thank you for your support x

  • Snap, my husband was always "gently encouraging" (his words not mine!) our daughter to do more. We had so many arguements about it, She was the type of child that needed the exact opposite, she needed to be told it was OK to rest.

    My understanding is that if you tackle it early, they used to say in the first 12 months, a child has a very good chance of full recovery. It doesn't really matter if it is a virus or ME as the treament is the same. I always regret that I listened to other people (including the doctors) who told me my daughter was just getting a series of normal childhood illnesses. I think that is why I replied to you, as I found it very difficult to stand up against the common belief that you can just "shake these things off" . if I had my time again I would have acted sooner. Stopped swimming lessons, stopped Brownies, stopped sport, stopped holidays and given her the chance of a full recovery.

    I hope you have a good experience at the doctors. When my daughter was diagnosed they recommended that she be encouraged to keep active. I smiled and nodded and then ignored them. She was a normal kid, the minute she felt the least bit better she was out playing with her friends. What I needed to do was say "you have to be back in 20 minutes, have drink and a rest then you can go back out again". In other words encourage her to be inactive!

    It sounds as though you are already doing all the right things. I hope your husband starts to understand how serious this issue is and that rest is the only thing that can help. I can't offer any advice there, as I never managed to get mine to understand.

    If you need to let off steam you are welcome to message me.

  • Thanks, I might need to message you to let off steam! He's a lovely man, trying be be supportive, but just in denial about how serious this could be. Just feels like we're on opposite ends of the scale with our opinions on how to deal with this! X

  • Hello. Sorry to hear about your health problems. Just a warning about sport. My friend's daughter was ill with ME just afters she won a scholarship to a brilliant school at 11 and had great difficulties. She had to be out of school for some time as she was too ill. Later she felt so much better and went back and asked her mother to let her do sport as she was so good at it and keen. Her mother let her and she really enjoyed it so much but after a while got very sick again. Since then she has been so much worse and is currently bedridden. Her mother is so upset that she allowed her to go back to sport as it was the the beginning of worse problems that have not gone away. So do be careful

    On the other hand, could there be a problem with gas in your house? I became quite ill some year ago and when I had some work done in my house they discovered that there was a gas leak in the floor. The gas pipe had deteriorated as it had been set in the concrete years before. I had always been so exhausted and feeling bad. Just a thought as there are sometimes other things that can affect our lives.

    All the very best to all of you,


  • Hi Miriam, callipet, well, after listening to everyone, I will definitely speak to the school and stop PE lessons. They already had stopped for the last three months and tennis lessons etc. I had (wrongly) assumed that if the boys felt OK to do sport again then they would be OK and it meant they were getting better. But I will err on the side of caution, and not let them do it yet.

    How do you know if someone has fully recovered?

    Is there a period of time that you need to go without symptons?

    If someone recovers fully, can it still return months or years later, or is it gone for good?

    Theres so many questions! Does anyone have any thoughts? X

  • I've had CFS for two years now, I'm 13 and I know this is irrelevant but i thought I'd share a little bit on what's going on incase your kids ever feel like they want to see what it's like for other children. I was 11 and I was still in primary school but me and my mum thought it was a virus, so when I started secondary I began to feel really tired after school and had loads of time off. The doctors said I could have had glandular fever but it was unlikely. After loads of stress and missing out on school, I finally went back and they brought up cfs which was a really scary thing for me as I had no idea what it was. I was missing lots of school and I missed my friends and I was getting really depressed. Now I'm 13 they have diagnosed me properly and I'm so happy about that. Now I'm having counselling , pyhsio, homeschooling and some other help too. I'm not in school everyday and sometimes not even every week and it's really hard but it's ok and I hope if your children have it (12 year old in particular) that they will get through it too :)

  • Hi Katie, thank you for sharing your experiences, I am so sorry that you are having to cope with this. I'm so pleased that now you are getting all the support you need. It's is hard to keep up friendships and for friends to understand how this illness makes you feel. This is definitely when technology is really useful. My boys do chat to their friends on social media and through computer games and Xbox. Keep smiling and stay positive! X

  • I personally am 14 but i have had CFS all my life aswell as other medical conditions. Cfs is not contagious but sometimes genetic so your children may have gotten it from you but it has only came up in the recent months. But i also went through more tests to determine where my medical conditions came from and it was neither my mom or dad. So it could be genetic.

  • Hi,

    I was 12 when I was diagnosed with ME/CFS. I'm 22 now and am currently in the middle of a flare up and in the process of being diagnosed with possible fibromyalgia on top of it.

    My great grandfather, grandad, mum, sister, and aunt all have had varying conditions that fall under the umbrella of ME/CFS/Fibro. We have said for years we think there must be a genetic predisposition or something at the very least. You're certainly not alone in being a family with it seeming rife! We all presented very differently, for me I had two bouts of glandular fever and then an ear infection which lasted 9 months by which time I was just a shell without an immune system! There's recent studies which have been done that show that there is regions of genes which are commonly found in people with ME/CFS and not in those without those conditions but it is a wee bit sketchy in places, unfortunately.

    I was lucky in that school were really, really supportive for me. I managed 6 GCSEs, 3 A Levels and I am in my final year of a natural sciences degree, specialising in biochemistry. Mainly to prove to anyone who told me I was a lost cause that I wasn't. Yep. I was, and still am, a defiant madam! It took me a bit longer than my peers but I've (almost, I graduate in July fingers crossed) achieved exactly what I wanted to. Getting rest breaks/extra time in exams is an absolute MUST - even if they don't use it it is always better to have it there! ME/CFS isn't a sentence to no education, thank goodness, it's about managing what you can even if it takes a bit longer! My GCSEs I spread over 3 years - I focused on one, sat that, moved on to the next. My A Levels also took me 3 years as I overestimated myself in my first year and had take my final year over the space of two! My degree, hopefully, will be completed on time but I'm going to have to take a year out to compensate for that! If I could have done it part time, I would have! In the case of your 16 year old, I'm sure you're doing it already, but just focus on the core exams and a couple of subjects they enjoy. It's pointless breaking yourself for a few more letters on a piece of paper!

    I've struggled but I've not let it take over my life. Once I learnt to manage my condition, which took about 5 years, I knew my limits which meant I started to get some semblance of a 'normal' life. I'm still very limited, especially when I'm really bad like I am at the moment but I'm lucky in that I have a very supportive family, a great GP and wonderful friends. The main thing I felt was social detachment, I didn't have any 'real' friends as they pretty much abandoned me, I buried myself in online communities mainly as this was before facebook! There are so many things you can do to socialise which don't use too much energy and it took me a good 8 years of being ill to work that out!

    I've been reading through the comments and reiterate anyone who said contact AYME. They were fantastic when helping my mum deal with me, also sent me a birthday card every year up until the age of 19 which always made me smile! They also provided a lot of information to help teachers, peers, family etc understand it which some people found more useful than others. Not sure if this is still the case, 10 years on, but I'm certain there is good literature about somewhere if not!

    Sorry this was extremely lengthy! But my parting note is this, your kids are lucky to have a mum like you who believes them and would fight for them until the end of the earth. Some of my friends with CFS/ME weren't so lucky, unfortunately and really suffered because of it.

    Keep positive x

  • Thank you for your reply. I'm so pleased you are doing so well and you certainly have shown that determination and strength will see you through anything.

    The boys have now been diagnosed with PVFS. The specialist said it was one of many sub categories falling under the CFS/ME umbrella. She thought we had all had the same virus that has genetically triggered it in us. She has said the boys should make a full recovery, faster than me, but after reading much about it we ll just take one day at a time. Am being positive, but also trying to be realistic at the same time.

    Had a meeting with the school which went well and we are going to see how the boys manage with 3 part days and some home teaching provided by the school. Its a flexible arrangement, so we ll just see how it goes, might be trial error until we get the base level right for each of them.

    No sport, strenuous activity, only short walks if they feel up to it.

    I feel that we can manage it better now we know what it is.

    Just need to get through these imminent GCSE's. We have doctors letters etc so he will get extra time, rest breaks etc and the sixth forms will take it into account if his grades are lower than expected.

    So all in all, we ve got everything in place that we can have really.

    Now it's just a case of getting on with family life as best we can and making the most of the good days.

    I wish you well with your degree, rest and relax in your gap year, then go and get a fantastic job that you enjoy, you deserve it! X

  • Hi I hope you are all going on fairly well now. I'm in Wales and we are presenting our case about ME to the Welsh Assembly on July 13th.

    If the boys begin to feel better don't allow them to go back to sport, sad as it may be. It definitely can bring back the symptoms. One case we're bring to the Assembly is that of my friend's daughter who I told you about. When she was ill at 11 and gradually improved, it was going back to sport that brought it back and she is still house and bed bound at 30, so it pays to avoid sport if they want to have an other-wise active life. We are all hounded with 'exercise is good' these days, even for people with ME through Graded Exercise...but that is really the wrong information never mind what anyone says!!

    All the very best.


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