1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Part 2: Brain Cells Making us Sick? Messed up microglia could be driving symptoms
Simon McGrath looks at theories that microglia, the brain's immune cells, might be overactive and driving the symptoms of ME/CFS and fibromyalgia.
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Den Project Appeal for Gillian McCarthy, ME/MCS sufferer

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 1, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog
  2. GcMAF Australia

    GcMAF Australia Senior Member

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

    Anteah Senior Member

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    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.
  4. taniaaust1

    taniaaust1 Senior Member

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    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.
  5. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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

    justy Senior Member

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    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
    leela, Little Bluestem and Nielk like this.
  7. Nielk

    Nielk

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    How does one use the paypal option?
  8. mermaid

    mermaid Senior Member

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    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.
  9. Nielk

    Nielk

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

    mermaid Senior Member

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    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.
  11. barbc56

    barbc56 Senior Member

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    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.:>)
  12. Valentijn

    Valentijn Activity Level: 3

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    I think the theory is that the poisoning results in MCS.
    justy likes this.
  13. satoshikasumi

    satoshikasumi Senior Member

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    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.
    anne_likes_red and justy like this.
  14. Adster

    Adster Senior Member

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

    justy Senior Member

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    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
    anne_likes_red likes this.
  16. caledonia

    caledonia

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    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
    Little Bluestem and justy like this.
  17. mermaid

    mermaid Senior Member

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    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.
  18. caledonia

    caledonia

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    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?
  19. anne_likes_red

    anne_likes_red Senior Member

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    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? :)
  20. mermaid

    mermaid Senior Member

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    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?
    justy likes this.

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