Newbie

[Julie87]

Hello
Thank you for welcoming me
I was wondering
If we could spread more information about ME out to towns, villages,etc have leaflets put in shops, GP practices, hospitals etc,organise the people that can get out into groups saying doing something each day if we can not just once a year like we do in May.. Get newspapers interested, magazines too, flood the uk with everything about ME make people so sick of hearing about us they will do something.
We are stigmatised for having this, so we need too broaden the struggle and we are not so that's why nothing and no one takes any notice.
Does anyone think this is a good idea? I live in Northumberland uk.

 

[Cheesus]

Hi Julie

Welcome to the forum.

There is actually quite a lot of ongoing activism that you could join in with. Much of it is discussed over on the advocacy forum and also on the fundraising forum to a lesser extent. A single day of action is a great idea, and it is something that is already being undertaken - both in the past and the future - in the shape of Millions Missing marches. Looking at this website, it seems that the next one is set for September 27.

I am too sick to get to marches and my parents were too busy to get to London, so we did a bit of our own activism for the last march by writing to our local NHS foundation trust (not too far from your local foundation trust) outlining some of the problems with ME services in the local area. We got a surprisingly good response from them.

So there is definitely a lot going on that you can get involved with! The more the merrier.

 

[Snowdrop]

@Julie87

Welcome to PR. There is advocacy work being done -- it's a matter of prioritising--there are some very sick people here.
I laud the sentiment and if you can get some of the more mildly affected to contribute to some advocacy in your area more power to you.

I don't know what you've managed to find in reading here at PR but I'll offer this link: http://www.meaction.net/
and of course the documentary Unrest: http://www.unrest.film/blog/2016/11...emiere-at-sundance-film-festival-january-2017

In the UK there is the education booklet ME Association puts out: http://www.meassociation.org.uk/201...ch-masterwork-is-published-today-1-june-2016/

I think as you hang around longer you might find there is much more going on than you think.

Alem Matthees a ME sufferer from Australia worked very hard to get freedom of information regarding the PACE trial (it sounds easier than it was) and he is now more sick than before. See: http://forums.phoenixrising.me/inde...st-recovery-claims-huge-damage-to-pace.46942/
and: http://forums.phoenixrising.me/index.php?threads/for-alem-matthees.50160/

There are many others who have done both big things and small according to their ability.

Still, if you can get something going in the UK with regard to education it would be good. Although what info is best shared will be a task all it's own.

 

[Julie87]

Hi Julie

Welcome to the forum.

There is actually quite a lot of ongoing activism that you could join in with. Much of it is discussed over on the advocacy forum and also on the fundraising forum to a lesser extent. A single day of action is a great idea, and it is something that is already being undertaken - both in the past and the future - in the shape of Millions Missing marches. Looking at this website, it seems that the next one is set for September 27.

I am too sick to get to marches and my parents were too busy to get to London, so we did a bit of our own activism for the last march by writing to our local NHS foundation trust (not too far from your local foundation trust) outlining some of the problems with ME services in the local area. We got a surprisingly good response from them.

So there is definitely a lot going on that you can get involved with! The more the merrier.

Hello and thank you for your reply
The thing is I have done that and haven't ever got a reply, I know there is a lot going on in other cites like London, Belfast etc but not near me so far away, what I mean is trying to get smaller places to do things set up meetings, hand leaflets out etc, I mean the people who can do this and obviously not the ones that are too sick to go out.
We have towns, villages, places that haven't ever heard about ME how to get them knowing what we have, I don't know anyone near me who has ME, this is what I mean.

 

[Julie87]

Hello snowdrop
Sorry I thought Phoenix rising was in the uk
My apologies
Thank you for welcoming to the group.
I have had ME for over nine years, it's got a lot worse and I find where I live no one understands or cares and I get very frustrated and very down to lack of people's knowledge about what we go through daily. I have joined ME action and I have read the purple book and I have seen the film. I did read about Alem matthees and what he did about the pace trials and I am a member of the ME Association as well.
I know a lot of people who have done what they can in trying to raise awareness but I just thought some ideas about what I said would be good to try and do but I can't do this on my own, I have moderate ME but the way it's going it looks like it will get worse and feel at a loss as how to get people together in other places in the uk not just nine places which I and other people can't attend.

 

[Snowdrop]

Hello snowdrop
Sorry I thought Phoenix rising was in the uk
My apologies
Thank you for welcoming to the group.
I have had ME for over nine years, it's got a lot worse and I find where I live no one understands or cares and I get very frustrated and very down to lack of people's knowledge about what we go through daily. I have joined ME action and I have read the purple book and I have seen the film. I did read about Alem matthees and what he did about the pace trials and I am a member of the ME Association as well.
I know a lot of people who have done what they can in trying to raise awareness but I just thought some ideas about what I said would be good to try and do but I can't do this on my own, I have moderate ME but the way it's going it looks like it will get worse and feel at a loss as how to get people together in other places in the uk not just nine places which I and other people can't attend.

I guess my thinking is that the attitudes of people locally will change as we hit the big centres and there is a kind of overall change--a paradigm shift in understanding. The trickle down effect I suppose.
But you are not alone in feeling isolated with this disease even though many of us are less physically isolated.

My apologies for the long info explanation when you'd encountered it all. I'm amazed that you've seen the film already.

I'm thinking of maybe starting a thread on it as I cannot attend even when it comes my way. '

Do you attend a local GP for care or do you go further afield to Newcastle or Edinburgh? Perhaps concentrating on your GP of choice would be doable alone. I haven't heard of anyone on here from quite your neck of the woods; many here on PR from UK seem to be from south west.

 

[Julie87]

I guess my thinking is that the attitudes of people locally will change as we hit the big centres and there is a kind of overall change--a paradigm shift in understanding. The trickle down effect I suppose.
But you are not alone in feeling isolated with this disease even though many of us are less physically isolated.

My apologies for the long info explanation when you'd encountered it all. I'm amazed that you've seen the film already.

I'm thinking of maybe starting a thread on it as I cannot attend even when it comes my way. '

Do you attend a local GP for care or do you go further afield to Newcastle or Edinburgh? Perhaps concentrating on your GP of choice would be doable alone. I haven't heard of anyone on here from quite your neck of the woods; many here on PR from UK seem to be from south west.

Hello snowdrop
I really hope they do as nothing especially seems to have changed at all and getting a lot worse especially with my treatment,

 

[Julie87]

Hello snowdrop
I really hope they do as nothing especially seems to have changed at all not in the years I have lived up here which is 20 yrs and I have had this since 2009.
What you said about hearing nothing from Northumberland is exactly what I mean you never do it's like we don't exist and that's why it needs to change as soon as possible.
I feel very physically isolated and it's not right we all need to come together as some of us especially up here are not getting the care we need and are treated like it's psychological and not neurological this needs to change but I can't do it on my own.
Sorry I thought you ment the introduction of the gin I saw that I haven't seen the film but I have read about that lady, it would be good if the film was shown to a wider audience but I expect it will be on you tube as where I saw the introduction.
I really hope you can see it in some way.
It would be nice to know if anyone else from the north east uk that I could connect with if you know anyone? I can just about go out with my husband but his family and kids live down south and he has to go visiting and stay over if a wedding or something comes up like this year his daughter getting married I can't go but he is so I am on my own again.
I have a lovely daughter my daughter is pregnant with her second child and she can't be helping like she did before but she does her best,we don't live that near so I don't have other family but I rely on my husband and daughter and grandson he is two to keep me going.
I have a doctor but the doctor and practice is useless I only go if it's an emergency as I get fobbed off I have had lots of tests they get sick referring me so it's not helpful at all.
Regards

 

[UKmum]

Hi Julie
I'm not in your area but there seems to be a thriving ME North East group on Facebook. Chester Le Street- don't know how far away this would be. It is nice to meet others face to face if you can but lots of friendly people on here if you can't. Best wishes

 

[Julie87]

Hello
Yes I know about that group but I can't get there as too a long a journey to me to get there.
Thank you though.

 

[Snowdrop]

some of us especially up here are not getting the care we need and are treated like it's psychological and not neurological this needs to change but I can't do it on my own.

People from around the world are experiencing exactly the same psychological drivel from their GP's. I'm in Toronto and my Dr thinks it's psychological--it most definitely is not. Even the many here from SW UK do not get the treatment they need unless they go private and/or travel.

Also, ithe movie will not go up on youtube any time soon. There are film festivals around the world hosting this film--it was recently screened in Denmark and there is a thread here on the media reporting (which was quite positive) on the movie. It will be shown in Vancouver (DOXA) and Toronto(HotDocs) in the next 4-6 weeks. There is still more going on the things I mentioned have already happened others are still busy meeting with their gov't etc.

Again, you really don't need to be in an isolated place for things to be the way you describe. You might get a different sense of this because some people travel to specialists and others go through Dr's til they find someone who is willing to treat their symptoms. But for most of us, we are in bed or on the couch or otherwise just getting by waiting and hoping that those who are able will help change things. And that seems to be happening, again, it takes time for it to move from the centre to the periphery.

And even those of us with very little resources (money yes but energy too) try to help by being here supporting discussing offering ideas and signing petitions.

There is a petition to stop the next clinical trial that looks like it will replace PACE. See; https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

To understand the issues many have with this trial See: http://forums.phoenixrising.me/index.php?threads/petition-opposing-mega.47466/

My apologies if this is not new.

 

[Julie87]

I think I just sent you a e mail hope you revived it, sorry was going to reply here to you.

 

[Julie87]

Yes I understand that, it's been going on with since I first got this.
I haven't a clue where the nearest film festival is to me and the way I am I can't travel even down the road, I can't afford to buy a wheelchair as they are over £2,000 for a decent one and my husband is not working now and is my carer and we get basic money to pay bills and eat but extras no.
I did think in Canada and America that you have more help for ME.
I really hope you can get to see the film somehow.
It looks very positive from what I saw but why can't it be on tv and local cinemas that would be a good start.
Yes I agree things are going on but not in this part of the country, I wrote to my local MP nothing back and wrote well e mailed another MP back nothing not a word, I sent e mail to sky news nothing and e mailed newspapers and magazines nothing again I really don't know what else to do, I have signed petitions as well. I do what I can, I can't travel and the ME supposed to be specialist who I had been seeing for two years is a psychologist what's the point in me seeing him he is patronising idiot and just uses up the little energy I have so that's the help I have. Like you said you here from people down south as more services and more understanding people who can help but we can't just move there and why should we. We live in local authority housing, we do not own our house.
Believe me I have changed my docs practices three times I can't change anymore as that's all we have here and we can't use doctors out of the area your not allowed too.
The sitting and waiting seems all I can do but it's a shame as wish I could more.
I have no money or energy but do have ideas but nothing can come of them it seems especially here.
I will sign the petition thank you.
I just wish I could connect with someone locally but there isn't.
I have Skype and could Skype you or anyone else for a chat.
Best wishes.

 

[ladycatlover]

the way I am I can't travel even down the road, I can't afford to buy a wheelchair as they are over £2,000 for a decent one and my husband is not working now and is my carer and we get basic money to pay bills and eat but extras no.

Hi there @Julie87, sorry to hear you're not getting any help. I've been lucky as have always had help from my GPs - I've had this disease for 25 years now. My GP has now referred me to the local NHS wheelchair service, still waiting for them to be in touch. Would your GP be prepared to refer you? Other option is to check out eBay - I got one for around £40 from a chap who'd bought it when he broke his leg. Of course you have to wait for one to come up close enough to collect it.

Also, have you tried to apply for PIP? If you get the care component I think that your husband could claim carers allowance. Probably telling you things you know already but better told twice than not at all.

I'm over in Liverpool, so closer than some but still a long way off from you!

 

[Julie87]

Hello
Thank you, yes not good here in Northumberland at all, think Newcastle much better for services, Liverpool right that's really good your GP helps and understands, that's what you need.
I didn't even know about the local NHS service for a wheelchair, will ask my doc as have appointment on Tuesday thank you for that. I have seen three OTs and what a waste of time they are I wrote down the things I needed but they say we don't do that as havent the money etc, the last OT came the other week and said let me see how you walk so I did and she said your walking seems fine but it's not I loose my balance and falling over, I can just about walk short distances but this was from the kitchen to living room and then up two steps with hands on both banisters and she didn't see that afterwards I was laid up for days later and pain in both legs.
I will check out E. bay as well, is your wheelchair motorised?
Thank you for the info will check it out and let you know.
Yes you are nerear,.

 

[ladycatlover]

is your wheelchair motorised?

No, it's a self propelling manual, though mostly husband pushes it. But I do manage a small amount of self propelling if visit art galleries/museums (about once or twice a year) as their floors are so flat and smooth. I think it's almost impossible to get motorised wheelchair on NHS these days. My eBay chair is a spare, as original has been a bit rickety for years now. We were glad of it though when my dear Mother in Law got ill and had difficulties walking - lent it for a while.

I hate OTs, my PIP assessment was with one, and though nice as pie at the time lied about a lot of stuff, including missing out the word "no" which turned my statement into the exact opposite of what I said. Complained to ATOS, with a copy to my MP, but they just said it was "an unfortunate typo". Yeah, sure.

If you need help applying for PIP Benefits and Work do good help files, costs around £20 a year. It was after using their notes on DLA renewal around 12 years ago I got moved from 2 years at a time to indefinite award, so was able to have a Motability car. Fightback4Justice do notes too, you can also find them on Facebook. They do some free stuff, but to access their how to fill in forms stuff you do have to pay. I have no interest in these other than I've found them helpful. Fightback have taken on my PIP case for Tribunal, which the Tribunal Service have told husband will probably be around mid May.

(Gone from low care and high mobility on DLA to standard for both on PIP. So lost my Motability car. I can barely walk 5 metres outside, but because I can get around inside house apparently I can walk up to 50 metres.)

Wishing you luck! Cyber hugs from Liverpool

 

[Julie87]

Ahh right I seen the one in your picture. I love museums and art galleries but it's after when home that my legs are painful I ache and my legs feel like led weights and cry with the pain, I can walk short distances but the way things are getting now it's better if I hardly do that as I pay for it after so much it's not worth it so that's why I really need a wheelchair.
I have seizure like episodes too it's hard to explain but I do get a warning now I didn't before.
I have horrible cognitive issues, they have got so much more worse this year, my husband said to get a MRI scan but I am nervous and doubt doc will even send me for one.

That's terrible about your PIP assessment but cross fingers for the tribunal in may really wish you luck.thank you for those will check them out.

Cyber hugs From Northumberland

 

[Snowdrop]

@Julie87

You have more company than you think.
I am housebound as some others here are. I am not able to even go to Dr's appointments and live in the main floor of a tiny bungalow. My husband makes enough to feed us and pay the bills--that's it (it's a long personal story). I do not live near relatives but occasionally my sisters visit briefly but my cognitive issues are now becoming so bad that it's hard to have a conversation even with my daughter who I love dearly and who lives/works/goes to school in the UK.

We are not alone. There are many more here in even more pressing situations. And I don't know where you get the idea that there is better treatment everywhere else -- in the US where healthcare is not universal people with good insurance or a lot of personal money can find Dr's who will provide treatment like antivirals if the person looks for them.
And there are a very few ME specialists but they cost money and you have to travel.

Some of us here have been sick for decades.

That said, I know how frightening this illness is and when you have few resources it's quite scary. Our lifeline is online here at PR. You are very welcome here. And there is so much info around this illness that is shared and discussed.

As regards your post about the e-mail I don't know if that was for me?

 

[Snowdrop]

I can't travel and the ME supposed to be specialist who I had been seeing for two years is a psychologist

They might call themselves that but think. This is a physical disease. Would a psychologist be a cancer specialist?

Jen Brea's Unrest can't be shown through tv as I believe there are certain legal obligations as she had help and guidance through Sundance in developing the film. It's not her private ownership I believe.

As to the MRI-- it's a good idea to rule out other possible problems but it will not show ME. And if they don't find anything then it makes them more certain that nothing is wrong with you so it's a double edged sword.

 

[slysaint]

down south as more services and more understanding people who can help

I am in the south and can assure you it's no picnic for ME sufferers down here either.

The politics of ME are pretty complicated and go back decades so it'll take a while to absorb it/understand it all (I knew nothing when I first joined PR and am still learning).

Mainstream media in the UK has largely ignored our plight (largely a political issue), but occasionally local news have reported some things (like the recent events in Norwich, and BBC Scotland;radio have had a couple of successful phone-ins featured on various threads here on PR).

We all completely understand the frustration; you only need to read a few threads to realise this.

But you have come to the right place, even if it 'only' means getting involved in cyberspace.
BTW; there is always the chat facility if you need to 'talk'.