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

[Countrygirl]

Thanks for the details for a way of donating to Gillian. Would it be ok if i reposted this to another site i am a member of? can we keep this for peoples attention on this forum by keeping the topic live, it would be great if we could get donations from people all over the world. Justy.

,

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.

 

[Countrygirl]

Many thanks for info C.G. - at least some light on the horizon. Every need looks pressing at the moment and will make my donation for whatever best for Gillian via Nicki and Chem Free. Unbelieveable this sort of thing is happening now. All the best to you. Enid.

Small donation just sent and Nicki advised.

Thank you, Enid. That is very kind and Gillian will really appreciate that.

Have you watched her videos?

C.G.

 

[ixchelkali]

Just found the details for somerset county council

E-mail
Generalenquiries@somerset.gov.uk

Write to us
Somerset County Council
County Hall
TAUNTON
Somerset
TA1 4DY

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

 

[Enid]

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

 

[justy]

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?

 

[Countrygirl]

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.

 

[garcia]

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.

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???

 

[Countrygirl]

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 stand corrected ............. good news, Garcia, thanks.................if Cort would like to speak with Gillian, I can supply him with her number. I know she would be only too pleased to speak with him.

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

(((((((((((((Cort))))))))))))))))))) ????????

 

[Countrygirl]

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.

 

[SilverbladeTE]

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*

 

[Hope123]

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.

 

[Countrygirl]

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, w e 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.[/QUOTE

]

This is wise advice Hope, but there is plenty of evidence that Gillian is genuine.

I suggest you view the links I posted to mcs-international.org and view the videos there from the official news channel on the national TV stations.

Gillian has also authored and co-authored about 14 books on her specialist field in biochemistry and is supported by a number of well known figures in the UK establishment. There is a wealth of evidence she could provide to set your mind at rest.

She is also supported by Professor Malcolm Hooper, who tried to intervene on her behalf.

I would suggest you first view the UK TV news items.

C.G.

 

[duckndive]

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.

 

[Countrygirl]

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

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.

 

[duckndive]

Gillian is considered to be one of the most severely affected MCS sufferers in Europe.

Considered by whom?

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.

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.

 

[renethorpe]

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.

 

[renethorpe]

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

 

[duckndive]

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?

 

[Countrygirl]

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?

Yes, there is a great deal of medical evidence to support her case. She has masses of medical reports from well-known doctors who specialise in ME and MCS............Dr Jean Munroe (G. was an in-patient at the Breakspear for 18 months), Dr Kenyon, and countless others from across Europe and one from the US. Professor Hooper has visited her to assess her situation and has supported her case. If you want to know more, you could always speak with her yourself. She would be far more able to direct you to the proof you require than I. She has been careful to document her entire medical history on film which should be available shortly. She has done this for the benefit of other patients.

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

.

Her previous supporters have spent their limited energies advocating for her for twenty years. The authorities will not listen and are not prepared to help her. That is now a dead end. There isn't any help for most of us in the UK. As an example, I tried to make a complaint on behalf of those of us with ME in my locality because our doctors refused to accept that ME exists and we were all told that 'it is in your head'. However, I was firmly informed that the health authority would not accept a complaint from someone with a diagnosis of ME as the illness doesn't exist. Appealing for help from the authorities for a severe ME/MCS patient is not productive.

I do not have the energy-time to help any more as I am ill and have elderly relatives depending on me and so posting here was my last hope of getting help for Gillian.

I encourage you to research her case yourself. There is sufficient evidence available for you to determine the validity of her situation.

C.G.

 

[renethorpe]

duckndive. Do you have MCS