Petition the government to fund ME/CFS and educate health professionals

Hi Margaret

Clicked on the link but change.org says the page doesn't exist.

Tbh not sure a petition like this would have much effect. There were absolutely hundreds of petitions on this site for all sorts of things. I don't think MPs would have the time to consider any of it. I think Action for ME's cross party government commitee gets to the issue more effectively.

Best wishes

Hi ME 65

Yes I've just tried the link above myself and it only registers the first part of the address so it's not going to work is it, oops!! I've repasted the whole link in below which hopefully will work this time for anyone who is interested.

change.org/p/david-cameron-...

The page is still there and the petition is still open. I know it is because I'm still getting loads of messages saying people have signed it. I posted it on the websites for Action for ME, ME Association, and ME Support too. All three of them have themselves "liked" the post and ME Support reposted it on their main page. I guess that is why I have had over 160 messages so far saying people have signed directly from the links I posted. And from what I can tell I'm pretty sure there are quite a few more signatures from where people have shared the link with family and friends. If Action for ME approve of it themselves it's got to be worth a try surely!

I'm sorry you don't feel it will do any good in terms of getting the government to listen (and in that you may well be right), but I can't agree that that means it's not worth trying. After all you know as well as I do that this condition is all but ignored and completely misunderstood so I personally feel anything we can do to raise awareness has got to be for the good, even if the petition itself does not achieve the stated aim at least it gets the word spread a little bit more. You must have noticed by now, if we don't shout about it, no one else is going to do it for us.

Yes I agree Action for ME do and other similar groups all do good work, but it's not working yet is it. Surely the more we spread the message the greater the awareness, every little helps and all that. I just think we owe it to ourselves to do everything we can ourselves to help ourselves, otherwise why should any one else bother on our behalf if we don't even do what little we can (it's just tapping a few keys).

Obviously no-one is obliged to sign, but I just don't like moaning about the lack of support and then ignoring an opportunity to at least tell that to the government and maybe, you never know, try and get them to do something about it.

Take care

Just to say I've just tried the link in this message and it did work so fingers crossed!

Hi Margaret

Retried the the latest link and got through. Watched video and signed petition!!

You are right. Just some days I am too crashed to fight the fight.

Take care x

Of course I completely understand, after all I feel that way myself many days, we all do don't we?

Sorry if I sounded a bit bossy but, it's just because like everyone else who is under the cosh of this flipping torture I desperately want people to listen. So when I feel a little more up to it I bang my drum where ever I can (even if it is barely audible!).

Of course it is absolutely not my intention to put pressure on anyone, particularly if they are not up to the fight (which is most days for us isn't it). You are right, I doubt very much this government will listen as they are a large part of the problem to start with. But my determination at the moment comes from the heart mixed with large amounts of frustration and desperation!

Thanks for your understanding and not biting my head off for getting on my soap box!

Look after yourself

Margaret

Hi Margaret, I clicked on above to sign, and its says whoops embarrassing go to home page. Would love to sign if I knew where to find it.

Regards Barbara

Hi Barbara

Sorry the link in the original message doesn't seem to be working for some reason and I can't figure out how to get back into it to amend. Try this one or the one in my second message above as I think that one is working ok.

change.org/p/david-cameron-...

Thank you

Hi Margaret

I am new to this forum and have not been strong enough to post any messages before as I am currently 10 months into what all the doctors believe is CFS but am waiting to see the neurologist for my results of brain and spine MRIs .It is almost certainly what I have, even though I just don't want it to be CFS. I am so Ill I feel as if I'm dying 😢I have been confined to my bed for the past eight months nearly ,i hardly have the energy to get to the toilet some days and even though I was once proud of my appearance and maybe a little vain I spend days without showering even as I don't have the energy !!! I have been hospitalised and had so many tests and its pointing to the worst case scenario now (which for me is this horrendous illness with no cure and ridiculed by so many ) just a few more weeks before I get the results from neurologist . I feel guilty and ashamed so PLEASE forgive me !!! because I'm hoping it will be something like Ms or cancer or something that will be acceptable to doctors and others and something which will explain why I feel like I'm dying !! Why I can't move why I have become a prisoner in my bedroom and I spend so long in totall silence as I can't stand any noice or visitors.

I opened my email and saw your post yesterday and I signed your petition I then watched the film and I wept and sobbed my heart out because I am grieving at the moment for MY LIFE THATS GONE !!!

Today though I'm still in bed and in terrible pain I've been thinking about you and I wanted to say how grateful I am that wonderful people like you are standing up and trying to make people see !! THANK YOU !!!! I hope you achieve your goal xxx

Hi Kateinbed

Oh bless you honey! You are obviously suffering terribly. I must just make it clear that the petition is not actually mine, it was started by Jacquie Cooper. But as soon as I saw it I was determined to do what I could to promote it. And yes it was a tough video wasn't it.

I completely understand why you would be so desperate for the diagnosis to be something else. As my husband who has more chronic illnesses and conditions than me always says, at least the doctors know what is wrong with him and can do something about it. Don't feel you have to apologise for feeling that way, trust me all us ME/CFS people do.

Yes this condition does ruin lives. I worked full time for 30 years, struggling more and more towards the end, but finally had to give up nearly five years ago when my first big breakdown happened. I have struggled with mental health too (still do) because as you say I am still mourning the loss of the reasonably productive life I once had. Now I feel abandoned by most of society, including some friends I once had. Yet I have not been as severely affected by this torture as you seem to be as I am more or less house ridden but rarely need to resort to my bed, though admittedly I do take a long time to get up!! Mornings are usually a missed event for me. It is precisely because I know how bad I feel and then I hear that others like you are suffering even more that I am moved to do my bit to help raise awareness, however little support that may be.

But rest assured we are not alone because at least we have each other on forums like this. If you ever need to vent or rant or ask questions or simply seek support just post on this forum. There are plenty of people here who will sympathise and offer you support.

I wish you well with your results etc. Don't beat yourself up for feeling the way you do, it's perfectly understandable. Try and stay as relaxed and stress free as you can and above all concentrate on looking after yourself.

Big hugs

Margaret

Hi Kateinbed

Sorry to hear you are so ill. I know exactly what you are feeling. Years ago I had a dramatic collapse and had no choice but to stay in bed for a very long time . I felt frightened and panic-stricken trapped in one room struggling to just be alive, it seemed. The isolation, which isn't by choice, and the severe limitations can take a toll on mental health. Do phone your doctor if you are feeling that you can't cope. Antidepressants can also help with pain levels but if you are prescribed anything take VERY small doses and build up over months as the ME tends to make us hyper-sensitive.

It does sound like you have ME and so it's not too soon to put some serious pacing into practise. Get hold of the pacing info on the Action for ME website. Once you have a formal diagnosis see if there is an ME clinic that covers your area and if so ask for a referral with a home visit. You are much too ill to be attending hospital appointments or a doctors surgery.

One thing that helped me a lot was learning a meditation. It calms down the nervous system and eases the stress. I lie on my back with two pillows under my knees and one to rest my feet on and one under my head. Eyes closed I start with my toes and count 20 breaths into my toes, then 20 breathes into the soles of my feet, the tops of my feet, the front of my ankles, my heels, back of my calf muscles... You get the idea. Working all the way up the body to the top of your head. Try to focus on your breathing all the time. The counting helps with keeping your mind occupied. Even so it will come up with lots of ideas and worries and other things you could be doing. Just gently ignore the thoughts and keep counting.

I hope this helps and as Margaret said we are always here whenever you need to scream and shout!

Lots of love and a hug

Hello Kateinbed, I am so sorry to hear how ill you are. Which part of the country do you live in? I'm in Wales. Would like to keep in touch with you. Do you text? Or are you on Facebook? I belong to MESiG, ME Support in Glamorgan. We are on Facebook too.

All the very, very best,

Miriam