ME / CFS

[Rosiemum]

My 14 year old daughter has been suffering from ME / CFS for the past 6 months. She went from a very fit, athletic, school-level rower to being unable to walk upstairs without resting almost overnight. She is gradually improving, but has anyone else experience of this condition and any tips for us on how to help her. The medical profession have been supportive but less than helpful with treatments or advice.

hello rosiemum
so sorry to hear about your dd s illness. When I was 11 I had an undiagnosed post viral thing and spent a lot of time in bed. I remember it well - months off school, unable to walk up small hills etc etc. But with lots of rest and tlc it did eventually get better. I think its important to keep up contact with friends and school (by distance)in the meantime - I guess this is v tiring for your daugher but do her friends come round? Can she use email/text them?
I am surprised gp not helpful with advice - there is supposed to be a lot of info available now on this. Has she seen a specialist yet?My good friend has had CFS for several years now. I will try and find out more from her. She has joined a local support group which has been v helpful.

Rosiemum - have you thought about seeking some help from the 'alternative medicine' field - I know that for example nutrition can be really helpful with ME/CFS - it is often related to a complete exhaustion of the adrenal glands. Alternatively, perhaps your doctor could refer you to an endocrinologist who would be able to do a saliva test to test levels of adrenal hormones. HTH.

Rosiemum - our neighbour's daughter got something similar when she was around the same age. I am not sure what the final diagnosis was CFS/ME/fybromyalgia and I apologise for my igonorance since it won't help you.

She completed her GCSEs and A levels at home with the help of a tutor (and some seriously good marks) and has gone on to do a degree - started this year - by distance learning. Unfortunately although she has good times, she isn't yet recovered which is why I have hesitated to post.

However, she has tried various alternative treatments. The one they felt did the most was magnetic therapy and she had a magentic mattress or something like that. She has gone through good periods and bad but she has an extremely positive outlook on life, a great deal of spirit and a seemingly unfailing belief that she will get better, which I think is fantastic. If mind over matter can work, she will get there.

Unfortunately they have moved away now and our contact is very sporadic. I miss her very much as she and my daughter were very close in spite of their 12 year age gap. Unfortunately we haven't been able to visit them recently because of coughs/colds on our part but if I get in touch soon, I will point her here if you feel that may help.

Thanks for the replies. I am particularly interested in percy's comment that alternative medicine may help - I have been wondering about that route myself, despite being an ex-biomedical scientist and now a science teacher!

She has been referred to one specialist, who had a lovely chat with her but then didn't feel the need to see her again.... School have been amazingly supportive (dd is rather bright) and she is managing part-time school at the moment - between 3 and 4 days a week most of the time.

I will investigate the diet route - having been a particularly keen rower and extremely fit the adrenal gland connection kinda fits. Percy, have you anything specific in mind as alternative medicine is a rather huge blanket?

Thanks for the help and support - it does make a difference.

Rosiemum - where do you live? I know some particularly good people (nutritionists) in London and also a couple out of London who I could recommend that have a particular interest in this field. Otherwise, if you call the Institute for Optimum Nutrition based in Putney London they have a whole list of qualified nutritionists all over the country. Please feel free to get my email from tech if you'd rather do this all privately.

Dear Rosiemum- this is a subject very dear to my heart because I am an ME sufferer.... CFS, or whatever you can call it..... I don't know if you know but Esther Rantzen's daughter Emily got the same thing a while ago and highlighted the work of an ME clinic in Oldchurch Hospital Essex, I can get the details if you want. I went to see them myself and they operate a self-help therapy based on cognitive therapy.

Their basic premise is that the person with ME /CFS is like a battery ... they need charging up from time to time... Their therapy is based on keeping notes about grading different activities according to the difficulty experienced. i.e., I found talking on the phone incredibly tiring, but sometimes, walking around the block wasn't too bad.... Each day you work out a timetable with different colour gradings/difficulties... but you must alternate these with rest periods... i.e. listening to music, relaxation, yoga.. etc.... It's bloody difficult at times, cos when you feel good, you tend to 'overdo' it, but it definitely teaches you to 'manage' the illness so in the end, you prolong your 'battery life' a little bit further each time.... I hope this makes sense to you!

I first got ill in 1985 and it ruined my career. The next 5 years were dreadful, but Im certainly more or less recovered now

These are the conclusions I've come to after many years of experimenting with everything that someone recommended to me...........

1. There is no cure. It's just that everybody is different. Truly. What works for one may not work for others etc... so my advice is to explore ALL avenues.. I've been told the following have been immensley helpful -

acupuncture -
Reiki Healing -

although sadly, neither worked for me...

2. It seems that it's a certain personality type that's prone to this sort of thing.... not necessarily a particular age group, or sex. The sort of person who is normally a 'do-er' and pushes themselves a lot. It can hit people as diverse as milkmen, teachers, professionals, .... but the common factor is that these people were never the sort to be ill! They were active, high achieving and socially active people. The last thing they would want is to be laid up and cannot understand what's happened. Does your daughter fit this bill?

I could go on all night as you can tell.... I would be very very happy to speak to her on the phone if that would be any help..... let me know on here and we could arrange it. Tell her, there's certainly light at the end of the tunnel.... if she paces herself as early as possible, it will - in my opinion - definitely speed up the process of recovery/management.

Thinking of youxxxx

Hi Rosiemum,

I am also an ME sufferer, have had ME since I was 13 (now 25). Great to hear that your daughter is gradually improving.

I would recommend you point her to this website: www.ayme.org.uk/ which is for young people with ME, she will be able to make friends with other people who have ME through this site.

The key to this illness to to make sure your daughter doesn't overdo things. Do you have the support of her school? It should be possible for her to get home tuition and when she is up to it to return to school for only as many lessons as she is capable of. I was able to attend school part time, although sometimes was off for weeks.

Its also worth reading books on the subject (I recommend Jane Colby's "Zoe's Win" for teenagers). Most library's stock books on ME/CFS and the more you understand about the illness the better able to cope with it you are.

This discussion forum for parents of kids with ME might be useful: www.raisingkids.co.uk/forum/display_forum_topics.asp?ForumID=16

Munchkinsugarpie, I run a website for parents that are sufferers of ME/CFS if you are interested the address is www.mecfsparents.org.uk

hth
Sally

Sorry just realised you'd already written about her school being supportive.. I'll blame it on brainfog after a rather wakeful night with my 5 month old.

Does she attend full days? As I found that just going in for an afternoon or morning was a lot less tiring (sometimes even just for one lesson).

Sally

Thank you so much for your responses.

I will check out the websites mentioned, and talk to dd to see if she would like to speak to you Munchkin.

Arranging for her to attend school for part days is quite difficult as we live 13 miles from school, and I teach full-time in a different school 7 miles in the opposite direction!

I am incredibly grateful for the support - thank you so much.

Dear Rosiemum, just back on the site after a gap.
I've had me for 8 yrs now and my 13 yr old son has now had it for just over a year so I can sympathise!
We're now getting hame tuition twice a week and luckily he is staying very positive - he enjoys the pc and internet but does not want to go on the me sites and prefers to think of other things.
Neither myself or he has had any treatment. I did dabble with exclusion diets but nothing seemed to makeany difference. I think the best thing is a positive attitude and to try and rest when, or before, you need it (not as easy as it sounds)
Best of luck anyway

Munchkinsugarpie has hit the nail on the head - different things work for different people. I had ME from age 13 to age 21 and got no support from GP who told me it didn't exist!(a while ago now!). However I went to see a nutritionist and followed an exclusion diet for about a year, gradually reintroducing foods and taking masses of supplements. Unfortunately it is expensive but if you can manage it it is worth trying. After a year I felt I had got back 80% of my "strength". Four years later I had my first dd - and have felt 100% ever since.

Keep your dd's spirits up (and your own!) - depression is something to watch out for - and keep up as much contact with her peers as she can cope with. It can really help with her recovery. Hope this helps.