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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

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    ,

    That would be great, Justy. That would be the only way Gillian would have any chance of having a home, although that would be expecting a miracle.

    I understand that Nicki at chemicalfree has found that the US will build a laptop suitable for people with MCS that will run by solar panels for 1000. She has the details, but I haven't yet been given permission to post them here. At least that would be achievable.

    C.G.
     
  2. Countrygirl

    Countrygirl Senior Member

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  3. ixchelkali

    ixchelkali Senior Member

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    Thanks, Justy. E-mail sent.

    I also found one for the NHS Somerset Health Service:
    NHS Somerset
    Somerset Primary Care Trust
    Wynford House
    Lufton Way
    Yeovil
    Somerset
    BA22 8HR

    Tel: 01935 384000 Fax: 01935 384079
    Email: headquarters@somerset.nhs.uk


    And for Somerset Community Health ("NHS Somerset's provider arm")

    Somerset Community Health
    Charter House
    Bartec 4
    Lynx West Trading Estate
    Watercombe Lane
    Yeovil
    BA20 2SU
    Tel: 01935 848220
    Email: enquiries@somcomhealth.nhs.uk
     
  4. Enid

    Enid Senior Member

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    Thanks to you all for the "addresses" search - so we know where to write.
     
  5. justy

    justy Senior Member

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    Im just wondering if maybe Cort would write a front page article on Gillians plight with the donate details, i dont know if he normally does that sort of thing, but as the situation is so serious and she is a resource for our community then maybe....I dont know him well enough to ask...anyone?
     
  6. Countrygirl

    Countrygirl Senior Member

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    That sounds a brilliant idea, Justy. Cort would find it interesting to talk with Gillian, but it would be a tad expensive to phone her from the US. Once she has a computer that problem would be solved. Perhaps Cort could look at the links I posted.

    C.G.
     
  7. garcia

    garcia Aristocrat Extraordinaire

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    C.G. calling US->UK should be very cheap provided the person used some sort of discounted service. I can call the US for a couple of pence a minute.

    I think an article/interview is an excellent idea. Cort would you be willing/able to do this???
     
  8. Countrygirl

    Countrygirl Senior Member

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  9. Countrygirl

    Countrygirl Senior Member

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    I have spoken with Gillian this afternoon.

    She has reminded me to tell you that at the entrance to her shack she has a 14 year-old bush, which she trained over the years into the shape of a phoenix..............her sign of hope.

    Gillian was in despair, but the kindness and support from you folk and others on two other forums have lifted her spirits. She has asked me to send you a huge thank you.

    For those who are kindly sending letters on her behalf, she asks that it is emphasised that she has a primary diagnosis of ME. The news outlets only refer to MCS and forget the ME.

    She tells me that the information I was given about the price of the laptop is incorrect. It is, sadly, 4 000. Her sight is very poor now, so she requires a large screen and she has lost much of the use of her hands, so she needs a voice synthesizer. This, of course, bumps up the price.

    Thank you everyone for all your support. Hopefully, this will help save Gillian's life in the short term. Without the house though, I can't envisage her surviving another winter. It was only due to the extraordinary generosity of the UK XMRV trial participants that Gillian survived the appalling freezing conditions of the last few months. They have even had to supply her with glass-bottled spring water at considerable cost throughout the winter as she has no fresh water now. They have also been keeping her supplied with hot packs as the temperatures plunged down to -20. If it hadn't been for the sequence of events that followed the discovery of XMRV and the WPI UK trial, Gillian would have certainly have not survived one of our worst winters on record. This situation is just not sustainable.

    For anyone in the UK, who would like to help it would be a great kindness if you could supply her with either AA and AAA batteries, stamps, cards or envelopes. She has exhausted her supplies and has no means of purchasing anything herself. If anyone would like to help in this way, I can supply you with her address.

    Thanks everyone.

    C.G.
     
  10. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    gagging order?
    oh let me guess
    court order brought out to "stop her making a fuss that will perpetuate her false illness belief! and it's for her own benefit"
    OR
    to prevent her naming the scum who've done this to her?

    vermin here ain't even got the guts to commit illgal euthanasia face to face or quickly and painlessly... *spits*
     
  11. Hope123

    Hope123 Senior Member

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    I know people are sympathetic and want to help but I also understand people have limited funds and there are all sorts of scams for money on the Internet as well as through the phone and snail mail. In the US, at least for established groups, we have Charity Navigator for example that helps donors figure out how funds are spend and where they go.

    I know for an individual that might be too much trouble (esp. if one is sick) but I would hope some verification of the story and, if people donate, some idea of where of how the money would be spent, would be good. The article from the Guardian I saw was just her writing in, not a reporter sent out to do a story. Just a reminder for folks.
     
  12. Countrygirl

    Countrygirl Senior Member

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  13. duckndive

    duckndive

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    Hope is absolutely correct. It's easy for compassionate well-meaning people to be scammed. If you donate to this 'cause', there's absolutely no accountability or traceability. You'll never know for sure who got your money or what it was used for.

    In England and Wales, The Charity Commission regulates bona fide charities. You can search for a charity by name or by area on their website here:

    http://www.charity-commission.gov.uk

    In Scotland it's here:

    http://www.oscr.org.uk/

    No-one in the UK is ever refused emergency medical care. If someone in the UK is in need of emergency medical care, they only need to call 999. If they aren't able to call themself, then anyone can call on their behalf. They have the right to refuse treatment.
     
  14. Countrygirl

    Countrygirl Senior Member

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    Gillian is considered to be one of the most severely affected MCS sufferers in Europe. She is unable to travel because of severe reactions to petrolchemicals and when, in the past, she has been transported by ambulance she says she had to be resuscitated on more than one occasion because of the consequences of her reaction to petroleum products. For the same reason she cannot be admitted to hospital. There is therefore no point in calling 999. The funding for the treatment she received in the past that did help her considerably (regular IV drips) was ring fenced, but the PCT long ago refused to continue with it.

    No GP in Somerset has yet shown any understanding/belief of her illness. ME here is usually considered to be psychosomatic so there is no appropriate treatment for her. As I understand it, they will only provide a psychiatrist. I have already related the reaction of the GPs when the practice nurse wanted to help her. Of course it is illegal, but we need people to ensure that she receives the care she is due under the law. . In the past, visiting doctors exacerbated her condition and so, to be frank, given the current UK medical climate, people with ME and MCS often decide that it is better for their health to avoid the NHS.

    While I understand your concerns, I do hope you will research her situation before you advise people to ignore her plight. To put it bluntly, this will only result in her death.
     
  15. duckndive

    duckndive

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    Considered by whom?

    Is there any independent evidence to support what she says?

    You said earlier that her primary diagnosis is ME. Has she ever been formally diagnosed with what she calls MCS?

    A more constructive approach to resolving her issues would be to advocate for her and help her to negotiate with the healthcare and social service authorities rather than begging on the internet for a new house, computer etc.
     
  16. renethorpe

    renethorpe

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    Somewhere on the internet there is a video clip of Gillian being resuscitated in the back of an ambulance. If I can find the clip I will post it. Noel Edmonds Himself had Gillian airlifted in his private helicopter to where she is living. Gillian is very well known to all of us in the ME world. This is an urgent plea to help one of our own in her desperate hour of need.
    '
    To all of you who may think its a scam please note this. take a chance what's a few pounds. I know we are all struggling for money but whats a few pounds. setting up the fund via charity commission or any other way is very hard to do, it takes Time. I know Ive been involved in doing this before.
     
  17. renethorpe

    renethorpe

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    Duckndive said'' more constructive approach to resolving her issues would be to advocate for her and help her to negotiate with the healthcare and social service authorities rather than begging on the internet for a new house, computer etc.''

    Its all been tried. You have no idea of how the severe ME sufferers are treated here. Could I ask where you live. Do you have MCS
     
  18. duckndive

    duckndive

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    Here are some places to start:

    Somerset County Council Advocacy Services:

    http://www.somerset.gov.uk/irj/public/services/directory/service?rid=/wpccontent/Sites/SCC/Web%20Pages/Services/Services/Community/Advocacy

    Citizens' Advice:

    http://www.citizensadvice.org.uk/index/getadvice.htm

    Turn2us

    http://www.turn2us.org.uk/

    These can all help genuine cases of need with advocacy, grants, benefits, mediation etc. etc. There are probably dozens more.

    How does someone who can't travel in an ambulance travel in a helicopter?
     
  19. Countrygirl

    Countrygirl Senior Member

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  20. renethorpe

    renethorpe

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    duckndive. Do you have MCS
     

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