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Can You Come for a Visit? My ME/CFS Says No
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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. ixchelkali

    ixchelkali Senior Member

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    I try to live by the advice "Don't feed the troll," but in case anyone else is interested, "Safe as Houses" was an organization that Gillian McCarthy started to disseminate information about MCS to those who might be suffering from it. As her health deteriorated she had to abandon the effort, but has made the materials available through the organization MCS-International.

    You can also read biographical material about Gillian McCarthy on the MCS-International website, at http://www.mcs-international.org/about_us/meet_the_team/uk/gillian_mccarthy.html

    There is a TV news story about Gillian, along with the backstory of what was left out of the editted version, at http://www.mcs-international.org/gillian_mccarthy_tv_interview.html

    Anyone who has been involved with ME or MCS patient organizations for very long knows that these cases have happened too many times before, and continue to happen. After encountering these horrors and getting to know some of the people involved, you know better than to assume the patient must be to blame in some way. There are, sadly, enough to fill a wall of shame.
     
  2. duckndive

    duckndive

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  3. duckndive

    duckndive

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    You wrote something in another thread that stuck in my mind. It was this:

    Substitute this thread for XMRV.

    Anyway, I've made some "non-party line" suggestions. Maybe in 5 years or 10 years when the next generation of Gillian supporters are appealing for money to get her out of the shack, someone might read this.
     
  4. fingers

    fingers Senior Member

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    Problem is they're not new ones, nothing that hasn't already been attempted. Possibly by lesser beings than you, sure. Perhaps that's it? The execution, not the strategy.
     
  5. duckndive

    duckndive

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    You're absolutely right that it's about the execution. It's abundantly clear from reading the linked material why she's still in the mess she's in. Whoever has been advising her has done a poor job, or she hasn't been prepared to take their advice. I don't know which it is.
     
  6. Countrygirl

    Countrygirl Senior Member

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  7. duckndive

    duckndive

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    She needs an advocate/mediator. I've suggested some places to start.
     
  8. Countrygirl

    Countrygirl Senior Member

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    In my conversation with Gillian two days ago, she explained to me that the donation site, chemicalfree.co.uk is registered with Scotland Yard, which is normal procedure when charity status is pending.

    Gillian's situation is very precarious now, as the Council is in the process of assessing the lane that skirts her shack for re-surfacing. She fears for her survival if the planned work proceeds.

    Duckndive, there has been no stone unturned, as far as I am aware, but not one organisation has any understanding of ME/MCS and two decades of experience has proved that there is no official advocate for someone with this condition in Somerset.

    Gillian urgently requires legal representation, but there is no funding to support this action. She would be well qualified to present her case to the European Court, if that were a physical possibility for her.

    She wishes to say a huge thank you to those of you here who have shown understanding of her situation and especially to those who have given her practical support. Your compassion is greatly appreciated.

    Many thanks.

    C.G.
     
  9. hope

    hope

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    Maybe Gillian could find legal representation on a Pro Bono (free) basis?
     
  10. duckndive

    duckndive

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    I'm sorry but that's BS. "Scotland Yard" is just another name for the Metropolitan Police which is the police service for Greater London. The only role that the Met has in respect of charity organisations is the issuing of permits for charity collections in public places in Greater London - like street collectors (tin rattlers) or door to door collections. This organisation isn't in London and isn't collecting in a public place in London. The Charity Commission website has very comprehensive guidance on the process for obtaining registered charity status and it doesn't involve registering with the Met. This is a good place to start:

    http://www.charitycommission.gov.uk/Publications/cc21.aspx#24

    You're missing the point. She doesn't need an organisation that understands ME/CFS. She needs a mediator who can conduct a dialogue on her behalf and negotiate with the various authorities in respect of her accomodation, financial and health needs.
     
  11. justy

    justy Senior Member

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    I have an update on Gillians situation after a long Phone conversation with her. Firstly she has asked me to pass on her thanks to everyone who has taken an interest in her case. She explained to me the situation with the safe house/land /planning situation etc.
    The planned LELA house has been designed to be a template for any future chemical free safe houses to be built in the U.K. Gillian has spent a number of years developing the plans for a safe garden around the house that can be used for food and environmental protection. This has all taken part under the name safe as houses project. The idea would be that the house and gardens would be an educational and health resource for all M.E/ MCS sufferers in the U.K who would be able to access the house design cheaply and reproduce the gardens etc.
    Due to the deteriorating health of Gillian and her advocates and the death of her father the project has stalled. Money had been raised through the safe as houses organisation and this has all been spent on Architects fees/plans and planning applications. As far as Gillian is aware the site is still available and the plans need some tweaking. The council at the time required a number of very detailed site surveys for the proposed development which have all been carried out. The safe as houses project is now being taken forward under the umbrella of Chemical Free which is a website run by Nicki and she is in the process of applying for charitable status. If the LELA house project can be finished then the house will be rented to Gillian and she will continue to work from there consulting on MCS/M.E and the development of safe environments. This obviously all depends on being able to raise a large sum of money.
    I asked Gillian what her most pressing concerns were at the moment and she said the resurfacing of the road outside her home and the eviction from her (enforced 15 year) temporary accomodation. The eviction is scheduled for May 2011 and she asks if anyone who has the time or energy would write to the council to object to her eviction until something can be done about the safe house. They can be contacted at:
    E-mail
    Generalenquiries@somerset.gov.uk
    Write to us
    Somerset County Council
    County Hall
    TAUNTON
    Somerset
    TA1 4DY
    The road is due to be resurfaced in June. The road is only 20ft away from Gillians home and is a small single track road with minimal usage. Gillian has requested that they only resurface the top and bottom ends of the lane and not the middle section which is the closest to her home. She acknowledges that this would still cause her considerable problems healthwise but she is trying to make a concession to them. Gillian was told that when she first came to live there that no roads would be resurfaced near her home. The main problems are the petrochemicals in the new road surface as well as the dust that will be caused for many months. She is also sensitive to the workers using their mobile phones. They have already been out recently and sprayed paint around the areas that they wish to repair. Gillian asks that as many people as possible write to :
    Scott Davies
    South Somerset Highways office,
    Mead Avenue,
    Yeovil,
    BA22 8RT.

    Once again Gillian is very grateful for any help that she receives. It was really lovely to speak to her in person she was very kind, taking an interest in my own health issues. She also had a lot of information about M.E and MCS and I am sure that she would be a very valuable resource to our community if she could get her housing and health needs met.
    Justy.x
     
  12. Countrygirl

    Countrygirl Senior Member

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    I have some good news from Gillian. The Council were so taken aback by the deluge of e-mails from around the world by folk on this site they have agreed to place an exclusion zone around Gillian's shack. This was in the nick of time, as the work was planned for mid-April. Gillian sends you all a HUGE thank you for all your kindness.

    The Council have asked whether any of us can recommend material which they can use to fill in the pot holes that won't cause damage to Gillian. They can't use concrete, apparently, and would be grateful for any suggestions from people here.

    As your e-mails have had such an impact on the council, Gillian asks if you would be kind enough to write to them before early May when they are planning the eviction.

    You folk have clout and influence.:D

    Gillian says she believes you have saved her life.

    Thanks everyone,

    C.G.
     
  13. justy

    justy Senior Member

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    Oh Country Girl, this is the most fantastic news! Gillian must be so pleased. Yes we can make a difference. the thing in the U.K is that they are not used to having so much interest from sufferers, if everyone stays involved we could really make a difference for Gillian and other severe M.E sufferers.
     
  14. ixchelkali

    ixchelkali Senior Member

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    :victory::victory: YES! :victory::victory:

    :balloons::balloons::balloons:

    So, does anyone know an MCS-safe pothole filler? I think we should try to help the council when they're willing to cooperate.
     
  15. Mark

    Mark Acting CEO

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    I'm very sorry I haven't managed to post on this thread until now; that certainly doesn't reflect any lack of interest in Gillian's case from my part. I'm proud and delighted to see that forum members have picked up this issue and already made a positive difference to the situation

    Cort has indeed been driven out of his house recently due to resurfacing of a nearby road/driveway, so he, like many of us with chemical sensitivities, does understand something of this situation and I hope Phoenix Rising will find more ways to help with Gillian's campaign in the coming months. Do keep suggesting ways we can help, Countrygirl. I'd also like to speak to Gillian over the phone, we can do an interview perhaps; there are lots of things we could do to help, I think.

    Another thing that all of us living in the UK with chemical sensitivities (and indeed with ME/CFS and other 'controversial' illnesses) understand very well, is that the routes that are supposed to protect us in our society do not function for us at all, and systemically make it impossible for us to obtain our rights no matter what avenue we may try or what support we may enlist. Small victories are few and far between. We know very well the difference between the theory and the practice here.

    For that reason, I find it almost impossible to imagine that duckandddive could possibly have written the following if s/he had direct personal experience of living with a severe illness which is not recognised and supported officially:

    This is precisely the response we have all heard from people who disbelieve our reality: "This can't possibly be true, because I prima facie believe that the UK looks after its citizens and has a safety net. I refuse to believe that the UK treats people like this." Actually, nobody wants to believe this, ourselves included - in fact it's a very frightening experience to come face to face with, because we don't realise how psychologically important that safety net is until we find it missing. The exposure of that myth is psychologically devastating. Two quotes that have stuck in my mind, from a member of this forum and one from Bad Science: "A society without a safety net for the worst off has no real safety net at all."....and "A safety net is still a net" (ie it is full of holes).

    Everything you say, duckanddive, makes sense only to somebody who hasn't learned from bitter personal experience that to their horror, it isn't true. Pretty much all of us on this site take these things for granted: we know they sound incredible, and appalling, and unworthy of a developed nation; we know it is hard to believe that people can be treated in this way and that there is nothing that can be done about it through the usual official channels - but we also know that is indeed the situation, and we know it through painful personal experience.

    So your input seems to me like the conventionally sensible and well-meaning input of somebody who simply trusts the system and is lucky enough to have no first-hand experience at all of the issues they are writing about. Somebody who is writing from a theoretical point of view, about how the system is supposed to work, rather than writing from the practical point of view of somebody who has been forced to discover that it doesn't work.

    Duckanddive: You have been asked several times on this thread whether you yourself have ME, CFS, MCS, or what? It's not an unreasonable question: most of us here start out by introducing ourselves, telling something of our own story, and we write from our own experience. It's only fair to ask that you now answer that question before continuing to question that which everybody else on this thread knows to be true.

    I think there may conceivably be some value for us in the points you have made: firstly that it can be useful for us to be challenged to make the case strongly and clearly; and secondly my reading of the situation does actually tend to agree with you that the short-term solution of keeping Gillian in her current situation is clearly not ideal, and the appropriate legal routes are the obvious way to go and are what ultimately needs to be done. I even agree that the publicity on the web sites linked to does not make the case in the best possible way, and really we could look right the way across our written materials and see much room for improvement - that's not in the least a criticism of our hard-working advocates, but it's true that our side of the argument is not presented with the same resources and professionalism available to the denialist forces ranged against us.

    But really, Duckanddive, your position overall has not been at all helpful so far. You seem to have said that we ought to go down the correct legal route, and that because that has been tried and has failed, the people helping Gillian must have not done a good enough job. Since the problem here is lack of resource - and a problem of the strong abusing the weak - it really isn't helpful to criticise those whose efforts to defend Gillian have not achieved the desirable outcome unless you have specific positive recommendations and a contribution to make.

    Everybody else on this thread is looking for a way to help Gillian, however they can, with the very limited resources we all have at our disposal. It would be nice to think that you are similarly motivated, but I think we all need to know something about what your personal interest is in this subject before we can feel confident about that. So please: introduce yourself...
     
  16. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    I've seen plenty of lousy, stupid, Kafka-esque, dangerous even catastrophic crap going on in the UK to realize almost ANYTHING cna happen..same in nearly any nation though.

    Britain is a country of "government by consent NOT law"
    bit hard to explain but basically, the British Bill of Rights, Constitution etc are not worth paper they are written on, quite literally!
    they are made up of many bits and pieces spread out over many documents over centuries, and since no law is ever repealled unless specifically done so by act of Parliament, and none of it's truly "hard wired"...it's all a worthless complex mess.
    Only the "European Human Rights" laws actually have real teeth, legally

    the USA's system is hard coded, end of the day, the Bill of Rights etc trumps all, so it's "Rule by law". But it has problems too, shysters have become too powerful and the law is being made a mockery of, lack of flexibility/application of common sense etc
    See abuse of the "Presidential pardon" for Nixon, which while some folks thought was a good idea at the time after Watergate, lead to a "get out of Jail Free" card that every politician has known about ever since which has led ot a very very dangerous problem.

    what all this means in practice is that the UK, when run right is very good, because there's less hair splitting, legaleze bullshit, it's consentual, common sense.
    But, when it's bad, oh you are screwed it's VERY hard ot get things fixed. If the consensus is againstyou...you're buggered :/

    The UK is also very much more tirghtly bureacratic, it has ot be, Southern England is one of th emost densely populated areas on the planet, vastly different than say the central states of the USA
    to allow the UK to function requires incredible degrees of organizationand thus bueacracy
    and bureacracy inevitably means...idocy, cowardice, "jobsworthies", corruption, chaos...sigh :/

    So folk like the Weasels can end up running rampant with no one to call them to account for the consequences of their actions...beauracrats refuse to change things due to laziness or to prevent previous misdeeds getting out, etc etc....
     
  17. pebble

    pebble Senior Member

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    Have you contacted Wikileaks yet?

    They are not accepting new submissions at the moment but individuals in Somerset responsible for depriving Gillian of her human rights by complying or looking the other way may be more inclined to help if they realise their names and faces will soon be exposed internationally on wiki leaks.

    I feel it would also strengthen the story to link it with the GMC s witch hunt of Dr Myhill and her Pigs Tail.

    This is an international story. Individuals at Somerset council need to consider the prospect of being named and shamed internationally.

    I know you already have enough footage of some of the individuals responsible. Shame on them.
     
  18. justy

    justy Senior Member

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    On this point when i spoke to Gillian she told me that a professional had been employed and paid to gtather together information and video footage to be published on the MCS international and Chemical free websites documenting Gillians case. Gillian tells me that although he has been paid he has still not posted the work where he was supposed to. She asks that if possible people could E Mail Julian Bishop asking him to publish the work on the web. His e mail is : videtrax@tiscali.co.uk

    Mark - an interview with Gillian published on the frontpage of the forum would be great publicity for her cause and also for the safe as houses project. They are still threatening to evict her in the next few months and the move could ultimately lead to her death. She also told me quite strongly that she doesnt think she can survive another winter where she is now. This is extremely urgent. I hope i am making sense -too tired to type and spell anymore. let me know if the e mail is wrong i took it down over the phone so hope it is right.
    Justy.
     
  19. Countrygirl

    Countrygirl Senior Member

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    For those of you who are phoning Gillian, I am most concerned to find that BT are now blocking all her in-coming calls. She has no means of communicating with the outside world or for summoning help should she need to.

    It was agreed that she pay about 12 a month for all calls, but, without informing her, they removed about 80 a month until they emptied her account. Gillian has disputed this with them but they claim that her phone has very high usage. G.however, says the calls they are billing her for have not been made on her phone and she doesn't recognise them and she has asked for them to reimburse the money that they have taken. They refuse to do this. They then blocked all outgoing calls. However, her line rental is still being paid, but without notice they are now blocking all incoming calls as well, so Gillian is now extremely vulnerable and has no way of contacting anyone.

    Does anyone have any contacts with BT, please? I have spoken with them, but they refuse to relent. Is this within the law, given her severe health problems and her isolation?

    Thanks,

    C.G.
     
  20. justy

    justy Senior Member

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    Hi country girl, i thought that BT had rules about vulnerable people. My only suggestions are to contact a general disability rights group about it or offcom or to contact the weekend newspapers money sections that give consumer advice. sorry i dont have any better ideas.
     

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