Discussion in 'Action Alerts and Advocacy' started by Countrygirl, Mar 22, 2011.
We lost a very caring ME MCS last year because she could not face another move. Aylwin Catchpole another person who had done so much to get help for other ME. sufferers. She ended up in a log cabin in Whitehorse Canada, but had to make yet another move but she just coudn't cope with any more. Lynne Gilderdale and Sophia Myras. Did they get the help they needed for local health authorities. Did Ryan Baldwin.Did the youn lad on the Isle of man who was thrown into a swimming pool. No they did not
It's interesting watching the various video clips about her situation. The authorities seem willing to help her but as she hasn't allowed them to undertake an assessment of her needs, they can't proceed. It's not an unreasonable request given that her needs appear complex. Perhaps if one of her advocates could persuade her to co-operate, solutions might be found.
Do you have ME duckndive? Have you been "co-operating with the authorities"? I'm sure if you would they would be willing to help you to help you find a solution.
Duckndive. you did not answer my question. Do you have MCS
and did you actually listen or read the other side of the story given here
Do you have severe MCS as well as severe ME?
Why are you, an ME sufferer, claiming that the UK will help people with severe ME. You should know how untrue that is, if you are genuine.
You speak as if you work for Somerset Council.
Also Duckndive, it seems rather sad that after posting one post back in December to say that you would never post again on here due to negativity directed at British people on the site, that you have just come back to direct a lot of negativity towards a person who is in a very vulnerable position.
It has been stated several times today the amount of times that support has been sought for Gillian from the official authorities without success. If you suffer from severe MCS (or ME/CFs for that matter), then getting help is pretty well non existent. How could you get help when it is not accepted that you have a 'real' illness?
Until I was in contact with Gillian recently to offer some support I knew nothing of MCS. If you google it along with the UK then it becomes clear pretty quickly that there is nothing out there, other than being sectioned and put in a mental hospital. Do you think that is a reasonable response in this situation?
Many of us here do not and are just trying to find a sustainable solution for Gillian.
You seem to have extrapolated from discussing one individual to everyone who has ME. I'm discussing the person who you have asked for money for and am trying to suggest ways of breaking the stalemate that seems to exist as far as her living situation is concerned.
I've suggested approaching the council advocacy service and a couple of charities who might be able to help open a dialogue between her and the bodies who can help her. If the council can't assess her needs for accomodation and support, then they can't provide for them. She appears to have a postal address so there is no reason why she shouldn't be receiving benefits. The organisations I've mentioned can help with these matters.
If you think you can do a better job than all those who have been trying to help/advocate for Gillian all these years then why don't you do as you propose, and prove to us how smart you are and how wrong we are? Come back and tell us how much success you have had.
Duckndive the reason I asked if you had MCS was to try to find out if you actually understand the condition and how it is treated in the UK. IF you are aware then you would know why there is such a problem with Gillian and Somerset council and the area health authority. So please could you answer if you have MSC or you know what severe MCS actually entails
I notice that the only other posts you have made was to complain bout Xenophobics on PR. The way you are acting here makes me wonder if you are MCSphobic
Good Idea garcia. Duckndive you could start by asking the council where the money went that was given to them by the government to build a house for Gillian
I have known the story of Gillian for about a year now, she is genuine and her needs are great. I have asked all the questions that Duckndive has asked and sorry to say Duckndive that there is no support for her, they are not interested, even her local doctors will not visit her.
Her MCS is severe, I believe that Cort suffers this too and has to sleep out on a veranda or out in the desert, for Gillian hers is so severe as has been outlined...and understandably over a period of time she has become isolated from society...not her fault, she is sick, but it makes it easier for those with responsiblity to ignore her.
Countrygirl has been amazing in her support for Gillian and I admire her greatly for this, she has championed her cause over the last year like no-one else...and when others have given up as 'too difficult'.
It is not about who has what and who is worse than who....we have to get through the best way we can, and help each other out as far as I can see as over in the UK there is not much in the way of support. You are right to look out for scams and times when ME sufferers are being shafted/taken advantage of which seem to be numerous...but I'm afraid the story of Gillian is genuine.
I've not proposed myself. I've proposed organisations which are expert and professional in their fields and are far better placed to find effective solutions.
A message for others on this thread. This thread was set up to see if help could be found in making a fellow ME MCS sufferers life a little more bearable. At the same time help her help others by writing about MCS. Gillian has very valuable knowledge which needs sharing. She would not have been living in those dreadful surroundings for over a decade if she didn't need to,just like I don't sit in a wheelchair when outdoors for the fun of it.. How she has survived the last two winters without heating in -17 conditions I do not know. How she has survived her frostbite I do not know. Take the situation as it is and make up your own mind. PWME CFS FMS autism GWS MCS all know that political correctness does not exist in our word. Prof hooper knows that all too well with his how to make an illness disappear papers. I would hate for the reason this thread was set up to disappear due to misdirection
That is why you have called yourself duckndive. You have ducked and dived all the questions put to you to see if anything you have said is based on knowladge of the situation or of MCS.
Thanks JAS. I have the impression that positions on both sides of this situation have become entrenched. Mediation services can be successful but they'll only work if the parties involved are prepared to engage in the process and move away from their entrenched positions.
so are you now accepting that Gillians situation is real and this is not a scam
Yes I know of Gillian,
Poor lady, she is very very sick, really hope we can get some money together for her, she needs all the support and help she can get! Its a very serious situation, I dont think we have much time.
My position hasn't changed. Sending money to someone who psts a sob story on the internet is unwise, unless you have unlimited money and don't care what happens to it.
In any case, in purely practical terms, the amount of money generated by this type of 'fundraising' won't change diddlysquat. Her living situation will only change when/if Gillian allows health and social services to assess her needs and provide for them, whatever they turn out to be. I've suggested ways of helping this to happen.
Ducking and diving the actual question again duckndive
You can also try a Google Site Search
Separate names with a comma.