ME/CFS sufferers need your signature please

deedee2665

Hiya everyone , i have me/cfs and suffer this terrible illness on a daily basis . Now someone has set up a petition to the government because no money goes into the research of this illness , and we need more research and funding of it for us to have at least some treatment which we currently do not have . I am going to leave to links 1 is to show how me/cfs does affect us and the other is to sign the petition . Please sign it we need as many signatures as possible .

http://www.sleepydust.net/me-cfs-chronic-fatigue-syndrome-video.html

http://petitions.pm.gov.uk/ME-is-real/

Many many thanks

Deedee

deedee2665

bump

sorry for bumping but we really do need more signatures

Thanks for looking

Freebyman

Absolutely agree 100%, my wife has m.e. One day we hope for a cure, its amazing how many doctors are ignorant about it, please sign the petition.

emmiemac

Thanks very much for this deedee2665.

I too suffer from the illness and have done for a number of years.

I wish people knew more about what the illness is like for those who suffer from it. I agree with Freebyman, even many doctors do not have a clue what it is like or how to treat it.

It is an absolute disgrace that barely any research is being undertaken to learn more about a condition that affects so many thousands of people. For something that can last such a very long time and have such devastating effects, so much more should be done.

christabell

Thanks for the link to this site, I to suffer from CFS/ME, and have not worked for over three years because of it. Thanks to MSE I have been able to budget my benefits so much better.

Are you also members of ACTION 4 ME? it's a great organization

BlondieE

Just signed it, thanks for bringing to our attention!

deedee2665

christabell wrote: »

Thanks for the link to this site, I to suffer from CFS/ME, and have not worked for over three years because of it. Thanks to MSE I have been able to budget my benefits so much better.

Are you also members of ACTION 4 ME? it's a great organization

Hiya im a member of https://www.mecfsparents.org.uk , its a fantastic web site for us sufferers , You dont have to be a parent to join and its for all the members of your family too who are affected by this horrible illness we have .

Take care everyone

Deedee xx

hjb123

Hi, thanks for the link. Ive already signed it and think I included it in a thread on here a while since. Its a great idea to get more people knowing about the illness and how it affects people as many just dont believe in it or us (I have it too!)

I find Foggy Friends a good site and am also a member of few different ME Groups etc

Cat72

Thanks I signed it as did my boyfriend. Totally agree its a totally misunderstood horrible illness where you suffer as much from societys persecuction as you do from the diesase.I have like christabell had the illenss for three years and MSE has helpedme survive the loss of earnings.

full-time-mum

I've signed.

I suffered for 4 years between the births of my 2 children (hence the 5 1/2 year age gap). People just don't realise how debilitating it can be as outwardly you appear to be perfectly normal.

I was never so bad as to be bedridden although I believe that if I was still working and not a full-time-mum, then I would have been signed off work and would have spent the afternoons resting/sleeping.

DD1 missed out a bit as I had no energy to run around and play with her and take her out. It's all flooding back now, not being able to put the washing on the line because my arms ached too much, lying on the floor crying because DD1 was running about like a normal 2 year old, not being able to sleep at night despite being absolutely shattered - I ended up on anti-depressants because of it. I also found I had to be very careful who I told about it as it has the yuppy flu image.

I was lucky that I had a very sympathetic GP.

Even now, I find that it takes me longer to get over illnesses and I am very susceptible to post-viral-fatigue. Looking back, I realise how awful and difficult it all was then, I've no idea how I got through the days let alone the weeks, and how much better I feel these days.

Do those of you who, like me, no longer suffer particularly from CFS find that the minute you get ill and suffer from PVF that you start panicing that it is all going to start up again and are you scared to do anything too energetic just in case?

I found that high doses of GLA (star flower/evening primrose oil) helped a little.

edit: I've just watched the brilliant sleepydust video and I've got tears running down my cheeks - I'd pushed so much to the back of my memory - I'd forgotten how horrible it all was. I wish that I'd had such sites available to me and I could have shown the video to those around me.

emmiemac

I'm also a member of Action for M.E., I really like the magazines.

I can imagine how difficult bringing up a little one while you weren't well it must have been full-time-mum, it's hard enough looking after yourself sometimes!

I'm 27 this year and really hoping to have a child myself in the next few years, for this I'm doing everything I can to try to improve my health.

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.

If anyone could share any wisdom on how they imrpoved their health I'd love to hear it