Daughter with CFS: Hi my daughter who is now 15 years... - EDMESH


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Daughter with CFS

ali46 profile image

Hi my daughter who is now 15 years old was diagnosed with CFS in January 2013. It all started after she was in bed for a week with flu back in March 2012. Before this she was very outgoing had lots of friends and loved sports. She started off with no energy, sore throat, headache, painful joints, fevers extra it was like she kept getting the flu all the time this caused her to miss lots of school. We had many visits to the doctors with ear trouble, breathing difficulties and so it went on but all the response was its a virus there is nothing they can do. The doctor eventually done the normal blood test extra which all come back normal. After a lot of going to the doctors she was eventually referred to the paediatric specialist who we went to see in January 2013 who then diagnosed her with CFS, She was also referred to other specialist but they put the symptoms down to CFS. She has had hydrotherapy which made her worse and she is seeing a physiologist which really does not seem to help. I am now looking for different way to help her so I am going down the alternative medicine route. She is really poorly at the moment with chest pain, breathing problems, headaches and severe dizziness extra. Since January she has hardly been at school and missed exams but was told she can retake in year 11. Its frustrating there does not seem to be any help out there. The school doesn't seem to know she exist, Her friends seem to have disappeared. Doctor surgery not much help. I am reading everything I can and will try everything to help her.

16 Replies

I have fibro and used to go into hospital for a painkiller infusion called procaine, anyway I got to know this young girl over the years who had cfs she was so poorly her mum used to wheel her in a chair and had to lift her on a bed and she slept the whole time she was there .

I hadnt seen her for about 4 years and a couple of weeks ago o was in asda and I heard someone say hello Margaret I turned round and looked at this young girl and couldnt place her for the life of me, it was the same young girl whom had no life beautiful dressed fit as a lop I swear I was bowled over she looked fantastic the physiologist had put on programme and luckly it worked I'm sorry I can't remember the programme , but I have seen with my own eyes some things do work and miracoes happen goodluck to your daughter and get well soon sweetheart xx Margaret xxxx

PS she was under a top proffessor nam3d prof Daymond see of he has anything on the net from him

ali46 profile image
ali46 in reply to marg54

Hi marg54 thank for your comment. we are still going to the physiologist mainly doing cbt and filling out activity diaries also still under the specialist. As a mum I really find it hard to see my daughter suffer so much but there could be light at the end of the tunnel so we need to keep upbeat and work hard to get her back to some kind of normality. I will look up professor Daymond on the net and see if I can get more information. Look after yourself and thanks again.

marg54 profile image
marg54 in reply to ali46

Its terrible watching your child suffer, I never mentioned that my daughter in lae has m e she like your daughter started with flu like symptoms she has been poorly now for a very long time and my heart breaks for her my grandson is now in his 20s and working and now doing his own thing and her and my son should be doing things what they couldnt do when the bairn was young this should have been the start of the rest of there lives together, he has founda job on night shift so he is there for her during the day, and there son is therebfor his mum on a night, I look at this family and my heart breaks my son not only worries for his wife but also me and its telling on him.

I pray that you find something to make your daughter well and let her get her life back again

I'm hoping one of my ex hospital friends knows where young Rachel live and if I do find out I promise you with all my heart I will find out what made her better and I will let you know

Keep strong

Love Margxxxxxx

ali46 profile image
ali46 in reply to marg54

Hi Marg its a terrible debilitating illness and we all need to keep trying as much as we can to find what works for the individual to make them feel better. Hope you are keeping ok and I hope your daughter in law finds something to help her. I am now doing all the research I can. I will try anything to see if it helps. Look after yourself.x

Hi, I'm 16 and have had ME/CFS for the past two years. I also had flu, and have had a lot of the symptoms that you mentioned. Missing school is really annoying, and I am currently doing my GCSEs but I think that if you are worried then you should apply for extra time and special consideration on the exams. She should be entitled to both, in terms of retakes, lots of people do them without having been ill so tell her not to worry! It is really awful and I can sympathize a lot. I found that with energy levels, taking Floradix twice a day has helped. It's available in Holland and Barretts (I think that's how you spell it?).

Also for subjects like sciences and maths, the CGP GCSE revision guides are so useful, they are set up in a way that is easy to understand if you missed topics in subjects. I really hope she gets better soon and I wish her the best of luck. She's not alone, I know a few people my age who suffer with similar problems :)

ali46 profile image
ali46 in reply to dmadeleine

Hi dmadeleine thank you for you comment. The school has not mentioned anything about extra time and special consideration for exams. I will look into this a lot more now because she will be in year 11 in September. I will also look at the CGP GCSE revision guides. She is worried about catching up because she has missed so much school. I will also get the Floradix to see if this will help her, I am going to met with the school soon to try and put in place a manageable plan. She is going to try an hour a day at school this week. I will let you all know how she gets on. Thanks again and look after yourself.

Hi its Marg here I hope you recieve this I for gotbthe other week I was reading this site and it was about someone who had, had ME and recovered I've just gt email from them they are called



Hi Marg I will look that up. Anything that helps is worth a try. I have made an appointment with a local alternative therapy clinic which will be next Saturday. Keeping my fingers crossed this might come up with something to help her. x

Hi, Sorry I cannot be more help with your situation, but have put some links in that may be helpful. I've recently been diagnosed myself with ME/CFS, but don't know how long I've had it though as the GP was quite happy to prescribe 'happy pills' to me, which I would still probably be on if not for my other half insisting that he was certain it was ME/CFS.

I hope some of the following may be of use. It's sad that it's private treatment in the majority of cases, it seems you have to have money to have health.


forums.aboutmecfs.org/index... (think this is the same aboutmecfs.org/ )





rsm.ac.uk/search.php?cx=002... (some articles are old, but may still be of use)





Consultants etc:-








( phoenixrising.me/treating-c... )

















theoneclickgroup.co.uk/ (an international health advocacy pressure group)

Hi thank you for all the links I will certainly look up all these. My daughter has found the AYME site very good. The GP was not understanding at all and put everything down to virus it was my persistence that my daughter was seen by a specialist. Even now the NHS is not really very effective it is all about managing, cbt, graded exercise and nothing else has been offered this is why I am going down the other route. It is sad that we got to go to the private sector for help. Look after yourself.

Hello all. My cousin aged 21 now has ME. She seems to get alot worse in the winter months. This year has been terrible she has had to use a wheelchair and a zimmer frame to get around. They have had to convert the garage into downstairs toilet and turn the living room into her bedroom. She is often very distressed and down. Also she has no social life as she is unable to leave the house. Although she has a very caring boyfriend of 3 years. She currently undergoes Hypnotherpay which she actually enjoys. She is also very skinny and very weak. The doctors have recentley told her she will need full time care and will never be able to hold down a normal job. Many friends and family turn a blind eye to her illness and tell her its all in head. Which is disgusting

Hi, I'm 23 now but I know exactly how your daughter feels I was in the exact same position at 15yrs old. I realise now the stress of being ill and having exams contributed a lot to my deterioration at that time. I had counselling at that time from a neurophysiologist as I had epilepsy too and that really helped. The school wasn't much help at all they talked of home tuition, which I think could have helped if I'd got it. Then decided as I also had severe seizures at the time I was not allowed to come to the school to participate in exams, as they didn't have the facilities to deal with my condition. At the time I was relieved to relax and not have to stress about it and gradually got better. I now feel cheated out of a normal education. After a year or two of rest I did gradually get better. I went to college and made new friends, and outta the blue the old ones got in touch realising I was having a ball with the new ones. There is light at the end of the tunnel things can improve. I was told I'd never work and literally a week later enrolled in college. I wish her all the best on her exams tell her not to worry as there is always another way! Day release courses and Re sits etc. Should be possible and nowadays its so easy to do courses online too. I sincerely hope things get better for your daughter. She should be proud of herself continuing with exams :)

Sometimes its the small things that help;

- vitamins B12, multi vitamins, vitamin D & good nutrition

- Relaxation

-yoga, tail chi and light exercise can gradually increase mobility

Prayers with you and your daughter x

I am so sad to hear this about your daughter. My daughter has cfs and is also 15 she has been ill for 15 months now and I feel so helpless! The paediatrician that we have seen has written to her school twice now explaining how unwell she is! Yet until I took my complaint to the deputy head teacher they were not listening. I was previously threatened by the school with a fine and the welfare officer along with them phoning and harassing me weekly. Thankfully now with my persistence and my very firm attitude they have backed off! My daughter is behind at school but is doing her best. She is now managing to get to school 3 to 4 days per week which is totally amazing as she was lucky to get there 1 day last year! She is still struggling daily and totally wiped out most of the time but I am so proud of her and so sad for her at the same time. Good luck to you and your daughter it really is an horrendous illness to have.

Hi may I also suggest you look up connexions and the youth support service then your town on the web they may be able to help.


Sorry to hear about your daughter

Our daughter got the symptoms you describe in 2016 aged 11

She had lots of tests in hospital for childhood cancers and they all came back negative after 2 months a doctor reviewing all her results said lets test for thyroid and glandular fever and glandular fever came back positive 6 months after that (having missed 2 full terms of school) she was diagnosed with me)

The next school year was under 20% attendance and whist her health (not school ) was our priority we contacted the local education authority and were directed to the people running eotas (education other than at school) for kids too ill to go to school etc

They then asked our gp to her paediatric consultant (all nhs) to forward her info

She wasvalso seen by an occupational therapist who had cfs patients who were kids

Then they had a panel meeting and read the schools attendance info etc

The upshot was they agreed our daughter was too ill for school and organised with the school for

Year 9 that she would have 5 hours of tuition per week in eng/science and maths at home for free and they follow the school curriculum

This stated this september there are quarterly meetings where they all meet ( the tutors, the school , the occ therapist, us and our daughter) to see how to support her and not be too far behind

This is uk wide at local authority level

Amazingly our daughters old school knew nothing about this service and were awful - so we moved her to a smaller school for year 9 ( she obvs does not go but they do support the eotas tutors) so she will keep up with 5-7 gcses etc

So thats education and a lot of schools dont seem to know about eotas but its there! Nationally


We tried the lightening process and it has not been that helpful for our daughter/ she said its not helped her as much as we hoped

We looked at diet and have found some things that really are helping

A health food shop called revital (also revital.co.uk)

Achy joints gopo which is rosehip with vitamin c really helps

D-ribose powder which is all natural no side affects is pure energy (your body does not need to convert it ) its just natural energy ready to go so that in am and lunch

A b vitamin tablet

A general all round vitamin we use called ultra juice which is lots of fruit and veg in a pill


And then to help sleep magnesium tablet 2 hours before bed to help relax muscles and gaba an hour before for calm

Everything is natural

Nothing has a side affect

And the reg gps never suggested any of it

We have been doing this ( ie looking at natural health supplements and diet) and its helped

Early days but our daughter has more energy and has been able to do a few teenage (13) girl things for the first time in a year ( go to the shops , see a movie, meet a friend, really basic things but before summer 2018 she was too ill to do this type of stuff at all

Next is dr sarah myhills book on cfs

We have contacted dr econ who is a cfs specialist near us and is referred to on her website and we plan to see him and getbhis input on what else we can do

Our opinion

Be lead by your daughter and how she feels and says she feels

If she says shes too ill to go to school then thats that

Ignore any doctor who says go anyway and push through

That will just make her more ill

Listen to her and her body

Our daughter is managing 5 hours of tuition

So we have monday maths at 3:30

Tuesday science and weds english

All in the afternoons for 1.5 hours

She feels worse in the mornings so we didnt take slots offered in the morning

She tries to do the homework on the other weekdays

Nothing on weekdays or school holidays

And if this works for one term them we’ll add going into school for geography lessons etc

Just slowly

If she feels upto it

I wake her everyday at 9.30

For some structure

Sometimes she feels worse than others

We try and get fresh air a fews days a week

She cant always manage it

So right now we are doing some school and tackling nutrition and health supplements going for a six or 8 weekly chat with an occupational therapist about how to cope ( as an ill teenage girl) and just listening to our daughter about what works

We also have a house rule

We can talk with/ about cfs and how she is feeling between 5.30 and 6.30 pm

That way she isnt asked all day long by all family members how she feels! I find this hard and am pulled up for breaking the rules:)

Anyway we are not experts but a lot has improved since eotas helped us and paul at revital talked energy/fatigue/pain/cfs

He runs revital chelsea ( i live in brighton but am from fulham and knew the store by reputation) paul has a degree/masters in molecular chemistry and researched cfs for a masters! So he’s super knowlegable and put together the supplements package for us


I had to give up my job when our daughter got ill

And i was self employed so there was no insurance or private health care that kicked in

The supplements last 3-4 months and cost about £170

The consultant dr erons we are going to see will cost at least £500

No idea yet if it’ll help

The gp said its cfs we cant do anything but did refer us to a pardiatric consultant who thinks our daughter should push thru ( both nhs)

The occupations therapist is brilliant and has been amazing plus thats free

The eotas people via our local ed authority are fatastic and thats also free

Our daughters been really ill for 24 months and theres a long road ahead

My husband changed his job to work from home a day a week and also now works 4 days not 5

And that gives me 2 days to work outside the home

We have tried stuff that didnt work for our daughter and stuff that is helping

Gradually things are improving at her pace

So just try and make a plan with her in charge.

Statistically kids outgrow this illness so theres hope

I hope this very long post helps you both

Best, Annie

I have CFS aswell amongst other chronic illnesses like Pots, Ed's and Malabsorption issues due to complications after I had a relapse in mono and its been the worst 5 months of my life! I know how how your daughter feels. It literally is debilitating and zaps your energy level hardcore and you can't breathe correctly and feel chest pressure and throat pressure and aches and pains all over. I've been doing research and what I'm thinking about speaking with my doctors is go start IV therapy of a cocktail of vitamins called Myers cocktail which I've read is supposed to help with these issues. Hope this helps!

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