1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
Discuss the article on the Forums.

Will the indifference of the UK authorities to ME claim one more life?

Discussion in 'Action Alerts and Advocacy' started by Countrygirl, Mar 22, 2011.

  1. Countrygirl

    Countrygirl Senior Member

    Messages:
    776
    Likes:
    451
    UK
    I tried to send you a private message duckndive, but I see that you have removed that option.

    C.G.
  2. duckndive

    duckndive

    Messages:
    42
    Likes:
    11
    I wasn't aware of that. I've switched it on.
  3. justy

    justy Senior Member

    Messages:
    2,458
    Likes:
    2,298
    U.K
    I would love to get back to the original point of the thread, what can be done to help Gillian. I am going to ring a friend of mine who used to work for Dell and see if he can offer us a contact for asking for a laptop as a donation. Is there any news on this from Pamb? Also going to work on getting Cort to do an interview/front page article on her situation.
  4. duckndive

    duckndive

    Messages:
    42
    Likes:
    11
    Fiddling while Rome burns?
  5. Countrygirl

    Countrygirl Senior Member

    Messages:
    776
    Likes:
    451
    UK
    Thank you, Justy. That is a great idea.

    C.G.
  6. justy

    justy Senior Member

    Messages:
    2,458
    Likes:
    2,298
    U.K
    Why dont ypou desist in being so negative. I would love it if you would help with advocacy for Gillian, you obviously have time on your hands.
    Do you have any idea what an assesment of her medical needs will mean? it will mean a journey she cannot tolerate to a place that will make her more sick to be told by a psychiatrist that she is meantally ill. Have you learnt nothing from the story of Sophia Mirza?
    Same goes for the housing people. They offered her a mouldy old moblie home to live in, full of plastics and not even wheelchair accessible.
  7. duckndive

    duckndive

    Messages:
    42
    Likes:
    11
    it sounds as if you're content to condemn her to living out the rest of her life in a squalid shack. I don't believe that anyone has to live like that in the UK unless it is their choice to. Perhaps you know that this is her choice. I don't. I have not mentioned a psychiatrist anywhere in my posts and I've watched the video clips where the council made it quite clear that the mobile home was not a solution to her needs. They have not been able to assess her needs and therefore cannot offer suitable accomodation.
  8. Countrygirl

    Countrygirl Senior Member

    Messages:
    776
    Likes:
    451
    UK
    I hoped I had made it clear in my PM, duckndive, that her medical conditions and housing needs have been repeatedly and thoroughly assessed over the years by experienced physicians and the reports sent to the relevant authorites, but they have chosen to disregard them. Nothing more can be done.

    Of course she doesn't want to live in a tumbledown shack. She is not there by choice, but because it is the only way she can survive until a chemical-free house is built for her.

    I am puzzled why you do not understand the situation.

    I think if it is best that we move on and concentrate how we can help Gillian.

    C.G.
  9. duckndive

    duckndive

    Messages:
    42
    Likes:
    11
    That's not how the system works. You don't get to choose who does your assessments and then submit them as a fait accompli. It sounds like she has had very poor advice. I've suggested organisations who could help her work through the process. However, if she is not open to alternatives and if the only thing that will satisfy her is having her house built, how she wants it, where she wants it, I fear she will indeed end her days in the shack.
  10. fingers

    fingers Senior Member

    Messages:
    210
    Likes:
    7
    SW Endland
    Hi all

    Sorry, not been here for a long time, and coming in late.
    I think I've just about got a handle on this discussion.

    My proposal is that everyone continues with CG's wonderful initiative here and does not waste time and energy humouring an alien being. This alien clearly has not yet got to grips with planet Earth. Either that or their agenda is completely opposed to everyone else here.
  11. fingers

    fingers Senior Member

    Messages:
    210
    Likes:
    7
    SW Endland
    Oh well, looks like he's back in his spaceship and heading home.
    Safe journey, my friend.
    Steve
    Planet Earth
  12. duckndive

    duckndive

    Messages:
    42
    Likes:
    11
    I find it odd and a bit depressing really that most of the posters in this thread can't conceive of there being more than one (their?) way to help. If the living conditions are a fraction as bad as the anecdotes suggest, the top priority should surely be to do something positive to get her out of that accomodation?
  13. fingers

    fingers Senior Member

    Messages:
    210
    Likes:
    7
    SW Endland
    Absolutely D&D, you seem to have decided to stay, and are learning fast.
  14. duckndive

    duckndive

    Messages:
    42
    Likes:
    11

    Think we must be at cross-purposes here. I have no idea what that means.

    If Gillian's living conditions are so dire, then someone needs to help her work with those who can change them. That doesn't involve throwing small change at her. It involves making sure she's getting any financial benefits she may be entitled to and supporting her through the processes necessary to enable her to be housed appropriately and and receive appropriate medical care.
  15. fingers

    fingers Senior Member

    Messages:
    210
    Likes:
    7
    SW Endland
    No worries man.......or whatever you are.
  16. Countrygirl

    Countrygirl Senior Member

    Messages:
    776
    Likes:
    451
    UK
  17. duckndive

    duckndive

    Messages:
    42
    Likes:
    11
    Can you provide a link to Safe-as-houses please? I've searched all the combinations of .com, .co.uk, .org etc. etc. I can think of and can't find anything. I've also searched the CIC Register, Companies House and the Charity Commission.

    On a separate but related issue, you have to be a bit careful in using the word 'charity' when describing an organisation. In the UK it means an organisation that has satisifed the requirements of the Charity Commission for registration and that is regulated by the CC. Registration and regulation provide reassurance to donors that their money is going to a bona fide charity for specific purposes and that it operates within a framework of financial integrity. CC registration confers financial benefits in the form of Gift Aid whereby the government tops up donations by the amount of tax the donor previously paid on the donation.
  18. justy

    justy Senior Member

    Messages:
    2,458
    Likes:
    2,298
    U.K
    Hi Duck n dive, i agree with you wholeheartedly that the top priority is Gillians accomodation, and that ALL avenues, even those previously exhausted should continue to be looked into. I am one of the people who has made suggestions on here and i have also donated a very small amount of money as an immediate emergency measure. However, i am certainly not "attached" to any particular way of thinking or being in this situation. your input and suggestions are valued as much as the next persons and i agree that anyone should be wary of internet scams. your knowledge of the processes could be very useful for Gillian.
    The way i see it is that the people who have been advocating for Gillian are all sick or elderly and not able to continue with the level of support previously offered. I think that country girl is just puttin gi out there for others to get involved in and to keep the campaign fresh and alive.
    I also agree that more information on her condition and the charity being set up are needed. This thread i see as a way of drawing those people together to sort this out further, i agree that it should be done in a proffessional and legal manner and i am sure that Gillian would agree, for that to happen she needs people who can do that and help her to do that which is very difficult when you are relying on serioulsy ill people.
    For example i am very keen to help Gillian and any others with severe M.E who have been marginalised by the healthcare system in this country, however i cannot drive for more than a couple of miles from my house about once a week. I dont live near a major centre or any other M.E patients. I cannot work even part time. Some days i have to limit my computer/talking/thinking time. In short i am moderately affected and trying to keep my own baseline high enough to function for my family and to have some quality of life.
  19. Countrygirl

    Countrygirl Senior Member

    Messages:
    776
    Likes:
    451
    UK
    Thank you for explaining the situation so clearly, Justy. As you say, I'm just putting the story 'out there' in the hope that others will rally around Gillian. Her supporters have mostly faded away through ill health and her main supporter, her father, has, sadly, died. A few UK ME sufferers ensured that she survived the winter, but we can no longer continue with regular help because of our health and need others to step in and share the load.

    C.G.
  20. Countrygirl

    Countrygirl Senior Member

    Messages:
    776
    Likes:
    451
    UK

See more popular forum discussions.

Share This Page