ME/CFS sufferers need your signature please

lavender_girl

Hi - Thank you so much for posting this!!!!!!!!!!!!!!!!!!!!!!!!

ktflosspot

Awareness is the key !
Thank you for the link to sleepy dust. I have a good friend who suffers from M.E but untill I saw the clip I didn't really understand.
Signed the petition ,hope it helps you as much as the video has helped me x
I can not empathise but I can send my love and thoughts x

ngbhughenden

Thanks for posting this. The more people who are made aware of this the better. I was diagnosed with ME and only got through it due to the love and support of loved ones.

full-time-mum

emmiemac wrote: »

Have fairly recently begun a big diet change, am now on the anti-candida diet which is wheat, sugar and dairy free. I really think it's making a huge difference. My husband is coming back from work to a cooked meal which he thinks is great!! Still a long way to go but even small imrpovements are a real lift.

I have since been diagnosed with IBS and have given up wheat. I don't think I could manage the whole candida diet thing, its hard enough finding meals which everyone will eat and will fit in with the wheat-free bit as it is. Having said that, though, if you are in the habit of doing it before LOs come along then you may manage.

The key is to pace yourself and if you are planning something heavy one day (eg: washing) then keep your diary free the next day. Keeping positive helps too. I find sunshine always brightens my mood too!

I've had a second child since the worst of CFS and I'm not saying it has been plain sailing but it is certainly doable, you sound as though your husband is understanding and helpful which will go a long way to making it all possible.

Cat72

Its nice to hear from everyone. As the sleepdust video says ME/ CFS can lead to financial and emotional hardships for most sufferers- it actually made me very angry when I think about all the suffering people have because they lose everything .
I remembered this article I read in the papers and am posting it here .Its about a beautiful young womend who died aged 32 from ME ( she is the first person registered to have died from the illness )and the horrendous way she was treated. Please read it if you can as my heart goes out to her poor mother and things like this should not happen- thats why its important to sign the petition .
Thanks so much for posting deedee2665.

deedee2665

Cat72 wrote: »

Its nice to hear from everyone. As the sleepdust video says ME/ CFS can lead to financial and emotional hardships for most sufferers- it actually made me very angry when I think about all the suffering people have because they lose everything .
I remembered this article I read in the papers and am posting it here .Its about a beautiful young womend who died aged 32 from ME ( she is the first person registered to have died from the illness )and the horrendous way she was treated. Please read it if you can as my heart goes out to her poor mother and things like this should not happen- thats why its important to sign the petition .
Thanks so much for posting deedee2665.

Hiya you are right about the lady that died from me/cfs i will put a link on now about it , i must warn you though it is very very heart rendering .

http://www.investinme.org/Mediatelevision2.htm

Take care everyone and thankyou so much for all the lovely responses .

Deedee (Donna)

RoxsiScotland

i have m.e. , its horrible and im sick to death of people calling me lazy. thankyou for bringing this petition to everyones attention.

vetfred

I was diagnosed with M.E. aged 15 but I was ill from 13 onwards I think. I was a sporty child travelling the UK and had just made the national squad. I missed 18 months of school and was told to drop a year in school. I refused and struggled on working from home when I could and got through my GCSES with 3 As and 7 Bs somehow. Strangely when I was admitted to hospital, a girl who was in my junior school who I hadn't seen for 3 years was admitted and diagnosed as suffering from M.E. too. This was 12 years ago when most doctors didn't recognise M.E. period, nevermind in children... or that's what it appeared to be like.

The most confusing thing for me was not actually knowing when I'd get better. And it goes on for such a long time, that even when I'm able to do most things a normal person would do now, I still feel like I've not got any energy and not the healthy person I should be... even though I eat well and look after myself, if that makes sense:)

marybishop

I have suffered from CFS, looking back probably since my teens, but of course like so many others it was never diagnosed as such. It was do-able until I had my twin daughters and after a not so brilliant birth and obviously the on-going sleepless nights it hit me big time. I was forever at the doc but it was always 'oh you've got a virus' - what, permanently??!! With me the CFS goes hand in hand with IBS. It wasn't until I saw a lovely lady doctor (by this time my girls were about 9) that it was finally diagnosed. She basically told me I had CFS and chemical imbalance depression (hardly surprising after such a long battle!). I have to say that the anti-depressants I was given really helped not only with my mood but amazingly with the IBS - it just disappeared! Over the years I have gradually improved (I was never bedridden like some poor people but did spend a lot of time in bed when feeling really poorly) but I do have to pace myself otherwise I'm prone to some of the symptoms mainly poor concentration and not being able to remember words/names which can be embarrassing and also the muscle twitches which were a really horrible feature of my CFS - anyone else had these?

Interestingly one of my DD's (now aged 14) was diagnosed last autumn with CFS. She like me went through rapid puberty which I am convinced was the trigger and the consultant she saw confirmed that this can be so. He did say that teens (particularly girls) are very prone to CFS because of the huge changes their bodies are going through and as such they just don't have the reserves there for anything else. My DD's biggest problem is her poor sleep pattern which again interestingly she has had almost from birth. Now that she's coming out the other side of puberty she seems to be getting better. Have to say it really helps if the school are sympathetic which her's was (her form tutor was fantastic) and she has since found out that there are others in the school with the condition.

I would say to anyone who is suffering from this horrible illness don't give up hope - I never thought I'd feel like a normal human being again but when I look back I realise how much I have improved and life is normal again.

full-time-mum

marybishop wrote: »

My DD's biggest problem is her poor sleep pattern which again interestingly she has had almost from birth. Now that she's coming out the other side of puberty she seems to be getting better. Have to say it really helps if the school are sympathetic which her's was (her form tutor was fantastic) and she has since found out that there are others in the school with the condition.

This is interesting. My eldest daughter (now 10) is a terrible sleeper, always has been but we are now approaching puberty and we have constant headaches and tummyaches and feeling sick which have been put down to hormones. It is very stressful for us, the parents, as the 'calling wolf' syndrome has kicked in and we never know whether she is feeling a little bit bad or really bad. I will now be watching very closely in case there is a genetic tendency to CFS.