Den Project Appeal for Gillian McCarthy, ME/MCS sufferer

January 1, 2013

by Elaine Stammers

gillian1As 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”:

http://www.youtube.com/watch?v=4fcB7WcUIIM

How you can help

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

gillian2Please 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  

 

 

28 comments

{ 28 comments… read them below or add one }

GcMAF Australia January 1, 2013 at 10:01 pm

My heart felt sympathies
I shall see what i can do to help

Anteah January 1, 2013 at 10:27 pm

That's truly sad! Just donated, not much at all but that's all could do for now, as soon as I get my next check will donate more. Stories like that just shouldn't happen in our day and age.

taniaaust1 January 1, 2013 at 11:59 pm

I think its such a shame that MCS isnt more recognised worldwide.

In Australia, I do know that they were constructing a special chemical free room for MCS sufferers at one of our main city hospitals, as currently people who have MCS badly cant even go to hospital due to their chemical sensitivities.

I myself cant use the normal volunteer transport services for those with disabilities to get to medical appointments due to they pack them full of people usually the elderly covered in perfume and then take everyone to their appointments around the place. MCS can really affect people from being able to access medical treatment and in so many other ways too.

I hope Gillian can soon get suitable living accommendation for her condition.

Little Bluestem January 2, 2013 at 2:34 am

My doctor requests that people not wear perfume to their appointments.

justy January 2, 2013 at 4:23 am

Thanks Elaine for writing this article about Gillians situation – and also for being able to get people interested in doing something about it!

I know that others on this forum (myself included) have tried in vain to get help for Gillian in the past, via various means. I love this can-do, community based solution to just get on and build a new and more suitable 'hut' The project also shows the advantages of making links with other communities outside of our own (in this case the eco/permaculture community) For people like Gillian and others in her situation relying on very sick people for help is never going to be enough. This project has been widely shared across the web via eco forums/magazines/blogs etc, which will hopefully educate others and build lasting links.

All the best, Justy x

Nielk January 2, 2013 at 6:50 am

How does one use the paypal option?

mermaid January 2, 2013 at 8:57 am
Nielk

How does one use the paypal option?

Nielk – thank you for asking. I am not a Paypal expert but I think you must register first with Paypal for this.

There are tabs on the site which make it clear what to do next. You can send money as a gift and I understand that if you have a linked bank account then they do not charge a fee under that option, but if the donation is by credit card then there will be a fee.

Thank you the rest of you for your kind comments.

Nielk January 2, 2013 at 9:05 am
mermaid

Nielk – thank you for asking. I am not a Paypal expert but I think you must register first with Paypal for this.

There are tabs on the site which make it clear what to do next. You can send money as a gift and I understand that if you have a linked bank account then they do not charge a fee under that option, but if the donation is by credit card then there will be a fee.

Thank you the rest of you for your kind comments.

I have a paypal account but, I can't find a website. The only link is to an e-mail address.

mermaid January 2, 2013 at 11:36 am

Hi Nielk
The website is not yet set up – it's being constructed at the moment. The Paypal is a way of donating but it's a personal email at the moment not an actual website. Unfortunately the project has happened so quickly that the support structure around it (ie fundraising with people to do it), is trying to catch up still.

There is a Facebook site on Gillian McCarthy Den where you can see more film clips etc on the posting thread, but it's mostly being used at the moment by the people who are doing the work, hence the need for a separate website.

barbc56 January 2, 2013 at 2:06 pm

It sounds to me like this woman has been poisoned and not MCS ,if such a diagnosis does indeed exist. I hope things go well for her.

Barb C.:>)

Valentijn January 2, 2013 at 2:22 pm
barbc56

It sounds to me like this woman has been poisoned and not MCS ,if such a diagnosis does indeed exist. I hope things go well for her.

I think the theory is that the poisoning results in MCS.

satoshikasumi January 3, 2013 at 8:26 pm

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.

Adster January 4, 2013 at 1:59 am

Will make a donation in a few days. Such a difficult situation for her, thanks for your efforts to help her out Elaine.

justy January 4, 2013 at 3:38 am
satoshikasumi

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.

Yes i think environmental poisening is a likely culprit for many in this illness. It could be that toxins are building up and causing all sorts of havoc – including damaging the immune system which would thenmake us susceptible to viruses and other pathogens.

I dont know about other M.E specialists, but Dr Myhill is very interested in this aspect of the illness – wether it is a primary cause or secondary effect i dont know, but she tests for toxins througha number of ways eg translocator protein studies (mine showed a result the lab had never seen before and arent able to interpret), DNA adducts and other tests such as hair mineral analysis.
she is very big on getting people to lower their overall toxic burdens and advocates FAR saunas etc.

I grew up in a street that ran parallel to the M1 motorway (major highway) it also had a train line (non electric) Children who grow up next to major raods have a much higher incidence of lung and heart disorders. Growing up as a young child in an area like that in the 70's is not going to be good for your health – although as far as i am aware none of the other children in my street developed M.E – or lung fibrosis. (genetic susceptibility? inability to detox?)

All the best, Justy x

caledonia January 4, 2013 at 4:19 am

I just want everyone to know, that MCS is caused by glutathione depletion, and the treatment for that is to lift the partial methylation cycle block so that your body can produce glutathione again. EMF sensitivity is caused by losing the myelin sheath, so that the nerves no longer have shielding. Again, it's all part of the same mechanism, and the treatment is the same to get the myelin sheath to grow back. Again, this is also the treatment for ME/CFS. These are all methylation cycle diseases. Some of us have one, the other, or all of them, but it's all the same.

The cause is a toxic overload overwhelming the body's ability to deal with it. The overload can be chemicals, viruses or prolonged severe stress, or all of the above. It doesn't matter what it is, as long as it's overwhelming to you. Your methylation cycle genetics determine if you can tolerate a little or a lot of toxins, viruses or severe stress. If you have several key mutations causing your methylation cycle to operate poorly, then when exposed to the same overload, you will get sick while your neighbor, co-worker or family member won't.

There is no longer any reason (other than lack of knowledge) for people to be living in tents and sheds. The treatment is not expensive. In fact, I've gotten significant reduction in MCS just from a bit of methylfolate.

First let's get Gillian out of her predicament, so she can concentrate on something other than surviving. After that, (assuming she has no internet access) if someone can print out Rich's papers for her, with her scientific background, she may be able to comprehend the whole methylation thing and apply it. Maybe this is way over the top wishful thinking, but wouldn't it be neat if, given the correct information, she could not only cure herself, but then pass it on to others who so desperately need it in the UK?

Here is the link for Rich Van Konynenburg's papers: http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/treating-chronic-fatigue-syndrome-mecfs-glutathione-and-the-methylation-cycle

mermaid January 4, 2013 at 10:18 am
caledonia

I just want everyone to know, that MCS is caused by glutathione depletion, and the treatment for that is to lift the partial methylation cycle block so that your body can produce glutathione again. EMF sensitivity is caused by losing the myelin sheath, so that the nerves no longer have shielding. Again, it's all part of the same mechanism, and the treatment is the same to get the myelin sheath to grow back. Again, this is also the treatment for ME/CFS. These are all methylation cycle diseases. Some of us have one, the other, or all of them, but it's all the same.

The cause is a toxic overload overwhelming the body's ability to deal with it. The overload can be chemicals, viruses or prolonged severe stress, or all of the above. It doesn't matter what it is, as long as it's overwhelming to you. Your methylation cycle genetics determine if you can tolerate a little or a lot of toxins, viruses or severe stress. If you have several key mutations causing your methylation cycle to operate poorly, then when exposed to the same overload, you will get sick while your neighbor, co-worker or family member won't.

There is no longer any reason (other than lack of knowledge) for people to be living in tents and sheds. The treatment is not expensive. In fact, I've gotten significant reduction in MCS just from a bit of methylfolate.

First let's get Gillian out of her predicament, so she can concentrate on something other than surviving. After that, (assuming she has no internet access) if someone can print out Rich's papers for her, with her scientific background, she may be able to comprehend the whole methylation thing and apply it. Maybe this is way over the top wishful thinking, but wouldn't it be neat if, given the correct information, she could not only cure herself, but then pass it on to others who so desperately need it in the UK?

Here is the link for Rich Van Konynenburg's papers: http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/treating-chronic-fatigue-syndrome-mecfs-glutathione-and-the-methylation-cycle

Hi Caledonia,
Yes, as you say, Gillian is a scientist and I know that she does have very clear ideas on what she believes causes her problems and indeed that they are treatable. Some years ago (many I think) she was able to have a drip with specific nutrients in it provided by the Health Authority and she believes that if she had that now then she would be a great deal better. Unfortunately it was withdrawn…..

I know also that she has consulted with many doctors who deal in environmental illness over the years (again not recently due to lack of £££ and her inability to go anywhere) and I think there is a consensus on how best to treat her – presumably as above.

However, yes, it would be very interesting to know what she makes of Rich's papers. I have read them myself but as indicated in my article I have a real science block in my brain! I have tried Dr Myhill's protocol but some of it I was unable to tolerate and the rest did not appear to change things for me. However I 'just' have ME and severe food intolerance… not the other issues of MCS. I have not tried Rich's protocol myself though I probably do use some relevant supplements or have done in the past.

Anyway, when the build is finished and Gillian is settled again I will print Rich's research out and see what she makes of it. She has no access to a computer at the moment, but has done in the past, and if the money for a new suitable one was raised for her, it's something she really misses.

caledonia January 4, 2013 at 3:03 pm

Mermaid, that's awesome.

Maybe it's because I'm from the US and we have a different healthcare system and thus a different attitude about things, but I don't get this whole thing about relying so much on the government for your healthcare. I've heard this over and over again from people in the UK. The govt. wouldn't pay for this or that, so, oh well, I just went without.

I understand not having huge amounts of disposable income to pay for alternative healthcare out of pocket, but don't you guys have health food stores or access to iHerb or whatever UK equivalent where you can buy your own vitamins?

anne_likes_red January 4, 2013 at 4:19 pm
satoshikasumi

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.

I was reading an account yesterday, from a doctor who saw hundreds of people diagnosed with what he called in his observations "ME Syndrome" in New Zealand in the 1980s. As far as I can tell he was having patients diagnosed with ME and patients diagnosed with CFS referred to him to see if treatment for pesticide poisoning might help.
151 of these people were treated for organophosphate poisoning (and in some cases paraquat poisoning) in the 1980s. Some had developed "ME Syndrome" after acute exposure to chemicals – firefighters attending a chemical warehouse fire for example.
The MD speculated a deficit in cytochome p450 phase 1 detox and cellular respiration predisposing some to "ME syndrome". He used HBOT to upregulate pgc1 alpha, mitochondrial SOD and Gpx.

NZ powers that be were (in many cases still are!) very attached to their agri chemicals especially in the 1980's, and this particular doctor was not given an easy time for suggesting certain chemicals could cause serious symptoms.
I was treated by the same doctor in the late 1990s and I experienced significant short term gain.
Rich VanK ever so generously listened to my various hypothesises over the years about what might have happened back there :) and we always just came to the conclusion genetics must play a part.

I've since talked to people who experienced just short term gain like I did, and others who feel they were actually cured after their chemical poisoning treatment. Of course there's the same old question of what exactly they were cured of. Chemical poisoning? CFS? CF? ME syndrome? :)

mermaid January 4, 2013 at 4:53 pm
caledonia

Mermaid, that's awesome.

Maybe it's because I'm from the US and we have a different healthcare system and thus a different attitude about things, but I don't get this whole thing about relying so much on the government for your healthcare. I've heard this over and over again from people in the UK. The govt. wouldn't pay for this or that, so, oh well, I just went without.

I understand not having huge amounts of disposable income to pay for alternative healthcare out of pocket, but don't you guys have health food stores or access to iHerb or whatever UK equivalent where you can buy your own vitamins?

Hi Caledonia
'I understand not having huge amounts of disposable income to pay for alternative healthcare out of pocket, but don’t you guys have health food stores or access to iHerb or whatever UK equivalent where you can buy your own vitamins?'

It is true that our system is different, but in reality the public health system does not provide much of help to people here with ME – certainly not in the way of supplements anyway, though they might help with painkillers.

Yes, of course we buy our own vitamins. I know that Gillian spent all of her savings on private healthcare to try and get better, including selling her own house.

I am sure she buys what she can still, though I know like me she has problems with tolerance, as we both are intolerant of many foods. If she didn't take such things as supplements she wouldn't be alive as I know her capacity for eating is very restricted.

I am currently taking around 10 different supplements/herbs myself so I am certainly using this approach as well as eating a very clean diet. Personally I take very little from our public health system for my ME. I am not a great lover of pharmaceuticals though they do have their place perhaps (eg my thyroid medication).

Mind you if it wasn't for our free NHS service then I would probably be blind in one eye – they paid for a sightsaving op for me a few years back, and then a cataract op later on. So I have reasons to be grateful for it, and fear a system where the poorest go to the wall as I understand can happen in the US?

caledonia January 5, 2013 at 1:31 am

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.

KayAnne January 11, 2013 at 5:02 pm

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.

mermaid January 18, 2013 at 4:13 pm

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.

Sasha January 19, 2013 at 3:12 am

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!)

mermaid January 25, 2013 at 4:34 pm

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.

Sasha January 26, 2013 at 3:57 am
mermaid

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.

mermaid February 3, 2013 at 4:33 pm

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.

Sasha February 4, 2013 at 4:03 am
mermaid

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.

synapse13 March 2, 2013 at 5:22 am
satoshikasumi

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.

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