Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
Discuss the article on the Forums.

Please would you consider doing a kindness to one of our community who is in dire circumstances?

Discussion in 'Action Alerts and Advocacy' started by Countrygirl, Dec 9, 2017.

  1. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,740
    Likes:
    19,319
    UK
    Would you be prepared to help to make someone's Christmas? I am thinking of Gillian, who, as some of you know, on account of ME and severe MCS, has been living in appalling circunstances for 20 years.

    As many of you know, GIllian was a biochemist whose exposure to chemicals, and especially organophosphates, induced ME and very severe MCS. She spent £280 000 on treatment for which she sold her home. However when the money ran out she became just as ill and for 20 years now has lived in a field near Wincanton in Somerset.

    She is now in her 60s, and last year her very squalid hut burnt down. I had visited once when the Council arranged to have her 'home' knocked flat by bulldozers. My friend Dr Annie Macintyre, who used to be medical advisor with Charles to the MEA, and I, went up there to join one other doctor to stand in the way of the bulldozer to protect her home. We also called Westcountry TV who came with us. When the Council's agents found that the TV cameras were following their every move they slunk away to wait for a time when G had no friends around. However, G's shack burnt down a year or so ago. A small group partly built a tiny den for her, but then left it unfinished and with a sodden earth floor.

    She has no running water, no toilet, no warmth, nothng. Her mum is now in her 80s and is in no fit state to keep travelling to her daughter whose life is at grave risk now winter is here again.

    Over the years little teams of helpers, some from PR, have kept Gillian alive, but she cannot continue like this without even her hut for shelter.

    If you are unfamiliar with G's story here are a few links:

    http://forums.phoenixrising.me/inde...k-authorities-to-me-claim-one-more-life.9358/

    http://forums.phoenixrising.me/index.php?threads/gillian-mccarthy-uk-severe-mcs-sufferer.48204/

    http://www.mirror.co.uk/news/uk-news/woman-who-refuses-use-electricity-7754238

    This is all that was left of G's hut after the fire and she had no insurance as it was too expensive:

    [​IMG]

    The conditions here are freezing now, and G has no electricity, no running water and no basic facilities.

    Her situation, as you can see, is dire.

    Could we just let her know that we are thinking of her by sending her Christams cards, and if you could manage it, a little gift?

    I suggest AA and AAA batteries, battery lights, stamps and woollen garments that are no longer chemically contaminated and, if anyone has one, an old sheep skin coat which she can cut up for leggings and a body warmer. She also now has a CD player, so music (apart from jazz) or talking book CDs would be lovely.

    I have one problem.........I have mislaid her postcode, so if anyone has it can they please PM me. I have contacted Nicki at MCS but she hasn't replied yet and I know @mermaid has it.

    I don't like to put her address on here, but please PM me if you are able to send her card and a little something, that would mean so much.

    Thank you Everyone.
     
  2. Shoshana

    Shoshana Northern USA

    Messages:
    2,748
    Likes:
    7,835
    Northern USA
    With her mcs, and such a living situation as hers, I wonder what else would be on an appropriate, actually helpful wish list.

    Is it things to cheer someone, or more useful items, the priority?
    I would like to help but atm, with my own limitations as well, (cannot shop )
    I think warm blankets, hats and socks...clothing, but I do feel some confusion as to how.
     
    JeanneD, Mel9, Sushi and 1 other person like this.
  3. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,740
    Likes:
    19,319
    UK
    G. is very chemically sensitive, which is why I have suggested items like batteries which would be safe and also very necessary as everything she has is battery-operated.

    I have just bought her a battery operated candle and some batteries with a Christmas card for example. If that isn't possible, a book of stamps or a CD from those in the UK would be great. If you are outside the UK then a card would let her know she isn't forgotten.
     
    JeanneD, justy, Sushi and 2 others like this.
  4. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    10,998
    Likes:
    32,289
    USA
    @Countrygirl Is there any way to send Amazon gift cards so Gillian can buy what she needs or would this be impossible? I have sent them to friends in the US and U.K. without any problem but they all had computer access which I'm assuming Gillian does not? Can you let us know?
     
  5. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,740
    Likes:
    19,319
    UK
    Hi@gingergrrl, no, G. has no computer access and is pretty much on her own. As she is very chemically sensitive she doesn't buy much in the way of new things because she reacts to so much. It would be better to arrange for things like CDs, and batteries, to be delivered to her from Amazon. Her urgent need is always glass-bottled water, but that is too specialised for us to organise.

    Here is a list G. had posted on her FB page last year which may give you ideas.

    https://www.facebook.com/groups/294018037381751/?ref=br_rs

    Hi everyone, Gillian has made a list of her most urgent requirements. There are very specific instructions for clothes - some that can be bought and some knitted or crocheted - I have the list in full. If you would like it, please email me: info@mcs-aware.org

    Clothes (please email for details)
    Glass bottled drinking water (particular brand)
    Toilet rolls
    Stamps
    AA and AAA batteries (I have no electricity so everything runs on batteries).
    CD’s (folk/rock/classical (not Jazz)
    Textbooks (list can be provided)
    Wrist Braces: If anyone has the Futuro Medium ones, I am looking for up to 3 metal stiffeners out of old wrist braces you no longer need. These are urgent as I keep dislocating my thumbs!

    "The hut and contents were NOT insured as prices were 8-10 times the normal premiums! See www.Westongazette.co.uk for April 14th to see pictures of the fire. Front page and page 18. The building collapsed completely 4 minutes after I got out. It was still smouldering 4-days later.
    Any donations gratefully received and my thanks for some I have already received.
    I have no bank account but mother has one used only for me, so it would be helpful if cheques made to Mrs B S McCarthy. Bless you! "
     
    JeanneD and justy like this.
  6. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    10,998
    Likes:
    32,289
    USA
    @Countrygirl I don't have FB access right now but wondering if they have a go fund me page (or something comparable) so people not in the U.K. can donate? That is probably the easiest way.
     
    JeanneD, Mel9 and anni66 like this.
  7. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,740
    Likes:
    19,319
    UK
    No, they haven't @Gingergrrl . It is a good idea and maybe someone who knows how to do this would be prepared to arrange it for her. ???? :)

    My immediate concern is just to ensure that she receives some 'festive cheer' at Christmas because, when you alone, especially in G's terrible cicumstances, Christmas emphasises how isolated we are. It is an especially painful time for so many of us, and my intention with this thread was to mitigate the sadness and lonliness that the season can serve to highlight for people who are coping alone with challenging circumstances,

    Judging by the inactivity of her FB page over the past year, G. needs a fresh group of helpers to enable her to both improve her wretched conditions and to enable her to survive. Maybe we have some folk here who might want to make this a project for 2018?

    It never ceases to amaze me that she is still alive.
     
  8. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,361
    Likes:
    12,329
    U.K
    Hi, im really sad to hear how the new hut turned out - i did donate pipes from our eco house build for underfloor heating so im VERY upset to hear they were not used.

    I once spoke to her on the phone and found her to be very generous with her time and very knowledgeable about M.E and organophosphate poisoning. A really lovely and bright woman who doesn't deserve this.

    Can you tell me what bottled water she requires? do you know the brand?
     
    MEMum, Gingergrrl and Countrygirl like this.
  9. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,740
    Likes:
    19,319
    UK
    I don't know the brand that she uses now, @justy.

    @mermaid may be able to tell you this,although I think she is still in need of rest after an op, so now may not be a good time to ask her. Perhaps in the New Year?
     
  10. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    10,998
    Likes:
    32,289
    USA
    @Countrygirl What would be the best way I could help her from the US since no donation page or PayPal and she can't use Amazon cards. Can you post or PM me? I really want to help her but not sure how!
     
    Countrygirl, JeanneD and Joh like this.
  11. AnnaDove

    AnnaDove

    Messages:
    61
    Likes:
    150
    Metro Atlanta, Ga
    @Countrygirl Will you please also send me an address where I can send mail and a package. Thank you so much for helping her.
     
    Countrygirl, Gingergrrl and Joh like this.
  12. AnnaDove

    AnnaDove

    Messages:
    61
    Likes:
    150
    Metro Atlanta, Ga
    @Countrygirl, Have you been able to locate an address for Gillian or her mother. I really would like to send her some Christmas cheer. Thanks
     
    Countrygirl and Gingergrrl like this.
  13. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,740
    Likes:
    19,319
    UK
    Yes, I have it, but I don't want to put it on a public forum so people are PMing me for it.

    I will get it to you!

    Thank you for your kindness. G. will greatly appreciate it. :) I must get her parcel wrapped now too.
     
    JD_Lucas and Gingergrrl like this.
  14. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    10,998
    Likes:
    32,289
    USA
    @Countrygirl I just sent you a PM for the info, too, and they are blessed to have you alerting us and arranging this for them.
     
    JD_Lucas, Joh and Countrygirl like this.
  15. JeanneD

    JeanneD Senior Member

    Messages:
    130
    Likes:
    371
    Is there anyone trustworthy physically near enough to G to carry things to her?

    It would be a pleasure to send money or Amazon giftcards to someone who can purchase some of the items G so desperately needs, wrap them, and take them to her as gifts during the holiday season.

    A gift-wrapped package can be sent via Amazon by those of us in other countries, but that lacks a truly festive air. A pretty pile of a cross-section of items she needs would be both cheering and possibly cover more of the necessities.

    If that's not possible, could there be an informal registry so we can make an effort to cover all or most of her needs? I understand she needs many duplicates like batteries and water, but other things perhaps not so much.
     
    Countrygirl and AnnaDove like this.
  16. Bavardlyn

    Bavardlyn

    Messages:
    2
    Likes:
    7
    Could you please PM me her address? I will send her a card. I'm new and haven't quite figured out how to do things like PM?
     
    AnnaDove likes this.
  17. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,740
    Likes:
    19,319
    UK
    Hi Everyone!

    Good news! I have just heard from MCS-aware who have let me know what Gillian needs and it includes what could be sent to her from other countries which some of you have been asking about.

    THis is what she urgently needs in large quantities:

    https://www.heatpacksuk.co.uk/uniheat-shipping-warmers.php

    This is the part of the email which relates to the above:

    Note of course everything must be completely fragance free.

    Let's as many of us as possible pitch in and help her this Christmas.

    We are freezing here now, and the temperatures have dropped to as low as -15. and that is very, very brrrrrrrrr! How Gillian survives this never ceases to amaze me.

    Thanks everyone.
     
    MEMum likes this.
  18. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,740
    Likes:
    19,319
    UK
    I tried to PM you but didn't see an option to do so.

    Would you mind asking @Sushi or @IThinkImTurningJapanese to sort this out for you@Bavardlyn as I don't want to put her address on the forum.

    Thanks @Bavardlyn
     
    Bavardlyn likes this.
  19. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,740
    Likes:
    19,319
    UK
    Yes, that is what is needed and I know the local vicar used to visit her, but I think that was a while ago.

    Yes, people can pay money into her Mum's bank account for her. Her mum is nearly 90 though, but it is the best that can be done at the moment.

    Nicki at mcs-aware will probably have the details.
     
  20. mermaid

    mermaid Senior Member

    Messages:
    621
    Likes:
    1,140
    Cornwall, UK
    Sorry not to have been on this thread. I had an emergency eye operation for a RE-detached retina just over a week ago (original op bad enough and that was last year). Very stressful and cannot see well due to gas bubble in eye and am still pretty exhausted. More so now as for a week I had to rest anyway, face down or head on side for pretty much the whole time, but now I am up I am trying to catch up and failing.

    What I do know is that Gillian does now have funding for a year's water supply courtesy of the charity which I have applied to for her each year - I heard about this just a couple of weeks back. This is the most they have ever given so that is well taken care of and a huge relief. Obviously she still needs the other things though.

    I have emailed you @Countrygirl
     
    Joh, Skycloud, johnnydme and 3 others like this.

See more popular forum discussions.

Share This Page