Newbie

[Julie87]

I am on the ME Association and I always see things going on in the south sometimes London, sometimes Bristol, etc, I never see anything in Northumberland, that's why I thought it was a good idea to see if any other people from my area and some how get together and spread more awareness of places, villages etc.

I agree mainstream media has so that's why we need to get them involved somehow.

At least you get some local news to do with ME here we have nothing as I don't know anyone near me who has ME.
I find so many people online and that's great but just wish there was more that's what I mean. Thanks for telling me about the chat facility.

 

[Julie87]

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.

 

[Julie87]

I agree with you, that's the whole point and why I don't think I will bother going anymore as he not helping and I can pace and do activities myself in small amounts.

That is a shame about the film as least it prove that ME is neurological to the people who don't think it is.

I was thinking that about the MRI you can't win whatever you you do so I don't know what to do.

 

[Hajnalka]

Hi @Julie87, welcome!

You're not alone, the situation you describe is a worldwide problem and what most of us experience.

That is a shame about the film as least it prove that ME is neurological to the people who don't think it is.

UNREST will be shown in cinemas and on TV and everybody is invited to host a screening in her/his community. Also:

WHAT IF I AM HOMEBOUND AND CAN'T SEE THE FILM AT A FESTIVAL, IN A THEATER, OR AT A COMMUNITY SCREENING?
During our community screenings tour, we plan to do a *limited* number of events where members of the local community who are homebound due to ME or other disabilities will be able to watch the film from home alongside theater-going audiences and participate in Q&A's. The film will eventually be more widely available to homebound audiences via DVD and online - we just don't yet know the details of how or when. In the meantime, if you are homebound, you can help raise awareness by encouraging your friends, family and allies to see the film when it comes to their town, at a festival or in theaters.

http://www.unrest.film/faq

 

[Julie87]

I really hope I and my husband can see it if it's shown in the uk, we have a big cinema here where I live would be great to see it here.
I have been trying to raise awareness to family but they don't believe in what I have so I have given up, I shared posts and did fundraising but the only person who put some money was one neighbour and my husband and my husband has a big family he put it on his FB page and no one said or did anything, the neighbor has moved now, my friends so called friends didn't want to know or understand so I don't have any apart from online friends which are great.

 

[Snowdrop]

@Julie87

Understanding about ME is a big learning curve and especially because the media have misrepresented things.

But don't give up. Consider that your family may need some time to take all this in and that while they don't respond instantly like they might if you had announced you had cancer there is still room open for them to respond to new information. Better news articles are happening incresingly and the science is becoming clearer so that there is still hope for them to come around.

Here is one good article on how the (non)science in the UK has misled people: https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/

And another article on an ME sufferer: http://stanmed.stanford.edu/2016spring/the-puzzle-solver.html

 

[slysaint]

I have been trying to raise awareness to family but they don't believe in what I have so I have given up, I shared posts and did fundraising but the only person who put some money was one neighbour and my husband and my husband has a big family he put it on his FB page and no one said or did anything.

People have found the tv article done by Carte Blanche useful to send to people as it packs a lot into ten minutes:
link to thread (as well as FB it is now on Youtube):

http://forums.phoenixrising.me/index.php?posts/832133/

 

[Julie87]

@Julie87

Understanding about ME is a big learning curve and especially because the media have misrepresented things.

But don't give up. Consider that your family may need some time to take all this in and that while they don't respond instantly like they might if you had announced you had cancer there is still room open for them to respond to new information. Better news articles are happening incresingly and the science is becoming clearer so that there is still hope for them to come around.

Here is one good article on how the (non)science in the UK has misled people: https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/

And another article on an ME sufferer: http://stanmed.stanford.edu/2016spring/the-puzzle-solver.html

 

[Julie87]

Yes they have but I just think we will be always misrepresented I really hope it changes but I can't see it.

It's my husbands family as my daughter understands what I have, I hear that his family have done so much for cancer e.g. Colour run, one sister she is in her sixties did a bungee jump his grown up kids do a cancer run each year, another sister did a sponsored silence and they know full well what I have, they won't change believe me I know.
And yet my fundraising page was ignored.
It gets me angry and upset and then I get annoyed at myself for been like this.
Yes that is true as you see that but ME you can't and you can't see how devastating it is and the impact.
I read both articles you sent me and it's heartbreaking to see the father that can't even hug his son and the effects of this,I can't get my mind around the way when you see the people how all of us was so active and the things we achieved to be left like this and thought of as malagaring as that word is on my doctors notes!!!!.
The ME clinic send out papers to fill in how you are doing and you tick these boxes and they say it's for there use on how we are after six months but I have looked at them and they are all to do
With psychological testing, scale of this and that so I haven't even bothered filling them in,and no point in me going back to seeing him as he isn't helping I haven't seen him for four months as I have other tests awaiting and said I need to see what's going on with those then I get back to him but after what I read and seen the articles you put I am not seeing him again.
Thank you for those.

 

[Julie87]

Thank you, will check that out.

People have found the tv article done by Carte Blanche useful to send to people as it packs a lot into ten minutes:
link to thread (as well as FB it is now on Youtube):

http://forums.phoenixrising.me/index.php?posts/832133/

 

[Julie87]

Thank you, will check that out.