Den Project Appeal for Gillian McCarthy, ME/MCS sufferer

by Elaine Stammers

As a new year begins, I sit in my house looking out at the falling rain and think about Gillian McCarthy sitting in her unheated and leaking hut, many miles away from me in Somerset, UK. She awaits the return of the group of people who, by starting to build her a warm shelter for winter, have brought her hope. A hope that I know, from her letters and from conversations with her mother, was almost gone.

I may never meet Gillian as we both suffer from a chronic condition, though it’s more likely that I could get to her than she to me. However, I have no car and she is off the beaten track, and any journey is hard for me. We began to write through the shared disability of ME, but she also suffers from Multiple Chemical Sensitivity (MCS) – a condition about which I knew almost nothing when I started writing to her.

I never had the brain to take in the complexities of the science, and less so now with reduced cognitive ability, but a year on now I have learnt much from my contact with Gillian. As a fellow human being I was moved by her plight, and I did my best to read what I could and to try to understand how a person with MCS could become so marginalised in society that they were reduced to living in a hut (or a shed or tent in the case of others). As with ME/CFS, the symptoms of MCS vary, but in Gillian’s case she is severely affected, having been an agricultural chemist and worked with organophosphate sheepdip before her degree training, and afterwards with many agricultural chemicals including close contact in field trials.

I was reluctant to do more than write to her, as Gillian’s situation seemed insoluble. However as the year wore on and I saw that her main support was via her 83-year-old mother who lives at some distance, I felt that I had to help to advocate for her if only in small ways.

Gillian has been living in a hut for 17 years due to a mess of apparent incompetence and unwillingness by authorities to properly support and house her. I cannot see how to move that situation forward since the authorities have publicly washed their hands of her and say they have no responsibility for her. I have googled MCS and the NHS and I see that it is not accepted as a recognised clinical syndrome, so little help is available in the UK except via private medicine. I assume that the situation is similar in the US.

Lateral Thinking


Sometimes a problem has to be solved in a new way. We have to be prepared to use lateral thinking, and this is what Tony Wrench and his workers are doing. They are not used to building shelters for people with MCS, but they have been willing to listen to Gillian’s needs and to research the best materials for the job – but they have been working at the worst time of the year and in truly horrendous conditions due to the urgency of her situation. Tony and the other workers have much experience with building environmentally friendly/low impact structures and it is hoped that some of their experience may perhaps serve as a future model to help other people with MCS. The den they are building will not be a permanent solution for Gillian’s problems, but it should help to save her life this winter and lead to a better understanding for her and hopefully for others with similar problems.

This project to help Gillian does not come at zero cost though, and we are still looking for help with funds to complete it. Several short videos have been made as the work progresses, and ITV Westcountry, who filmed just before the building started, are due to return in January to film and interview again. A website about the project is under construction. The most recent film is on Youtube: “Gillian Den build”:

How you can help


The den will cost around £10,000 and so far about half of that money has been raised.

Please post cheque donations to:

Gillian McCarthy Rescue Fund, 10 Innox Hill, Frome, Somerset BA11 2LW

Or by bank transfer into this account:

Helen Deeming, Coventry Building Society sort no. 40-63-01, account no. 59239807 Ref: Gillian McCarthy

Or via Paypal (there may be a small charge for payments from overseas or from credit/debit card):

gilliansden@gmail.com

View the Post on the Blog

 

Yes, many people don't have insurance, so they go without preventative care. Then when what started out as a small problem eventually gets very bad, they go to the emergency room to get treated. This is, of course, very expensive.

However, if your income is low enough, the hospital will write off a large portion or even all of your bill. However, if you have too much income, then you're stuck with paying a huge bill. This can put many people into bankruptcy. It's not uncommon (at least among my musician friends) to have fundraisers for people who got sick and couldn't pay their medical bills.

Anyway, this will be changing as the new "Obamacare" phases in over the next several years.

 

There is a web site called give forward that allows people to donate to a friend or family member. Not sure if it will transfer to the uk but worth a try. It's worth a try to google it and find out. So many people in dire need and so few ways for a hand up.

 

Thank you KayAnne, and I am sorry to have been so long in responding to your post. I have checked out Give Forward and it looks a very good way of raising money for friends or family, but on the FAQ it makes it clear that at the moment it only covers the U.S.

We did look at other similar schemes that might be active in the UK but none of them were suitable for a short time project as it had to be a registered charity.

 

Just had a bit of a google, looking for an update and found this:

http://www.thatroundhouse.info/06.htm

UPDATE Jan 9th 2013
Updates are very infrequent when we have so much cloud and rain - almost no solar electricity. Sorry about that. Two major developments have taken place recently.
The first is the mission to build scientist and Multiple ChemicaL Sensitivity sufferer Gillian McCarthy a heatable den for the winter. This has been a very interesting and challenging project in Somerset which still continues, thanks to the efforts of a stalwart band of natural builders. More updates, pics and info on the Facebook page Gillian McCarthy Den, which may be here

. The project is still desperately in need of donations for materials and expenses, but is going well. Please help if you can.​

The Gillian McCarthy Den Facebook page (you have to be logged in to see it) is here:

​

http://www.facebook.com/groups/294018037381751

and the latest entry (15th January) from Tony Wrench, who I think is in charge of the building project, says:

It's going well but slowly. The roof will be done next week then week after that will be walls and floor. I haven't been there to take pics but Simon is sending some recent ones and they will be up here this weekend.

I really hope she's OK - there's snow in her region and it's going to last for a couple of days at least.

(Sorry about all the weird formatting, it's from copying & pasting stuff from all over the internet and I can't get rid of it!)

 

Thank you for that Sasha. I have been in contact with ITV West Country again and they should be coming back to film around 7/8th Feb all being well. The snow has really held things up there but hopefully it's going to warm up for a bit now.

 

Thank you for that Sasha. I have been in contact with ITV West Country again and they should be coming back to film around 7/8th Feb all being well. The snow has really held things up there but hopefully it's going to warm up for a bit now.

Thanks, mermaid - do you know how Gillian is? I was worried about her in the snow, and the building not yet finished for her to be in.

 

So sorry Sasha, for some reason I am not getting messages telling me when a post has been made on here, and have not looked as often as I did at the start.
I know that Gillian has been managing to stay in reasonable spirits despite the snow. I think that having people on site has helped enormously as they can keep an eye on her, although as you say it's not ideal as the Den is not yet finished.
However good progress is now being made, and ITV Westcountry are coming back to film this Thursday, so some of us will be able to see progress. I also am going to ask ITV to post the film on their website, as they did last time, and then it can be saved and hopefully put on Vimeo to be viewed more widely.

 

So sorry Sasha, for some reason I am not getting messages telling me when a post has been made on here, and have not looked as often as I did at the start.
I know that Gillian has been managing to stay in reasonable spirits despite the snow. I think that having people on site has helped enormously as they can keep an eye on her, although as you say it's not ideal as the Den is not yet finished.
However good progress is now being made, and ITV Westcountry are coming back to film this Thursday, so some of us will be able to see progress. I also am going to ask ITV to post the film on their website, as they did last time, and then it can be saved and hopefully put on Vimeo to be viewed more widely.

Thanks, mermaid - I'm glad Gillian has made it reasonably OK through the worst of the weather but it must have been a wretched experience.

I'll look forward to seeing the TV coverage - I thought they did a good job last time.

 

Considering the link that has been found by Haley et al between organophosphates and Gulf War Syndrome, which has symptoms identical to ME/CFS, the role of environmental chemicals in causing ME/CFS may have been underestimated and the role of viruses overestimated.

Chemicals have not been adequately studied or ruled out as a cause of this disease, in my opinion.

Organophosphates have long been recognized as one of the causes for ME/CFS symptoms and it definitely appears that those with MCS are much more likely to be those who have organophosphate and/or organochlorine poisoning. It does not however invalidate the viral and bacterial hypotheses for the other subsets of ME/CFS. See "Enteroviral and Toxin Mediated Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Other Organ Pathologies" by Montero and Richardson.