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"Get Well from ME" Update Video

Discussion in 'General ME/CFS News' started by slayadragon, Jun 14, 2013.

  1. slayadragon

    slayadragon Senior Member

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    Giles Meehan talks about his experiences with mould avoidance, the Locations Effect, the Rituximab and mycotoxins studies, and the petition to release Karina Hansen from a mental hospital in a new update video for "Get Well From ME."

    >Hello! Just a quick update from me! I wouldn’t often cover news from the M.E world, because there are so many blogs and websites which do, but here are a few things to share.

    >As you may have heard, last week, Norway’s medical research council announced it would provide funding for the cancer drug Rituximab, to see if it is safe and effective to help patients with ME. In the last 3 months, a crowd-sourcing campaign has been raising money, and now, with Norway’s decision, a full “Phase 3” trial can go ahead, in several centres, with around 140 patients. Rituximab suppresses the immune system, by drastically reducing the level of B cells, and it’s thought this can reduce symptoms in auto-immune diseases. A small trial so far has suggested that two-thirds of ME patients had a significant improvement in their symptoms, after taking the expensive chemotherapy drug. It still seems confusing to me whether ME means that your immune system is over-active and needs suppressing, or it’s under-active and needs stimulating - or, I suspect both at the same time! But the researchers hope to consider why it might appear to work for some people but not for others. And it is certainly forcing research into ME as a real disease, to be taken rather more seriously.

    >The fundraising group, “Let’s Do It For ME”, has also launched an appeal, to fund a Rituximab study to be carried out in the UK by “Invest In ME”. They have also recently reached their start-up target of £100,000, which will mean that their first research project can start in Norwich. The Genome Analysis Centre will look for a possible link between ME and gut inflammation and infection, by testing for all viruses, in samples from patients who have ME according to the Canadian Consensus Criteria - including severely ill patients. More information is on their website ldifme.org/

    >But some very ill patients are still being treated horrifically. For over 4 months, Karina Hansen in Denmark has been held against her will by a psychiatrist who wants people to believe that M.E is not a real disease, but that it’s a “somatisation disorder”. She was forcibly taken from her home, say her supporters, and she desperately needs to be allowed back home for proper care and support, and not treatments which threaten to make her even more severely ill, like forced exercise or psychological interventions. Please do sign the petition on change.org for her to be released from hospital.

    >Also in recent medical research, from America, a group of 112 patients with Chronic Fatigue Syndrome, or ME, had their urine tested for three particular types of mycotoxins - that’s toxins produced by moulds. 93% tested positive for at least one mycotoxin. And, asking the patients, 90% of them had been exposed to buildings which had been water-damaged or flooded - at home, or at work. A separate group of 55 healthy people who hadn’t lived or worked in water-damaged buildings, tested in the same way, showed zero positive cases of mycotoxins at detectable levels. The researchers believe that exposure to mould toxins could trigger, or make worse, dysfunction of mitochondria, which could cause ME.

    >A new Facebook page is now highlighting another aspect of environmental factors on ME, fibromyalgia, and other illnesses, including autism and depression. The “Locations Effect” page states that it “reports on places where people have enjoyed enhanced feelings of health or experienced improvement in chronic health conditions”, saying that “people around the world are reporting that they feel better in certain locations, often in dry, remote or less polluted areas”. And it’s not just the sunshine or lack of stress on holiday, there does seem to be some link between location and levels of symptoms, energy levels, how much sleep is needed, ability to do aerobic exercise, mood, and more - sometimes with quite dramatic effects. One lady has posted that she became ill with ME when she worked in a school with a toxic environment in America, then moved to the Alps and says that her chronic fatigue syndrome is a lot better now, though she is still very sensitive to chemicals and has to avoid them. She says - and I think she is pretty much spot on - that she would prioritise healing as follows: “1. A safe living space (a good environment with no mould and no chemical exposures); 2. Fresh, organic foods (with no pesticides, chemicals or preservatives); 3. ‘Safe’ products and toiletries (with no chemicals or fragrances); 4. Lots of sun, and then a Vitamin D3 supplement; 5. High quality vitamins and supplements (Magnesium, Vitamin C, Co-enzyme Q10, and L-carnitine); 6. Oils (one third of the diet should be good oils -- obviously not processed oils or fried fats -- and she recommends rubbing coconut oil on the body daily); 7. Use epsom salts or baking soda in the bath every day for detox; 8. Walk as much as you are able to (which I’d agree with, although I’d emphasise that rest is the most important thing while the illness is still active, and only to increase walking or other gentle exercise within your current limits without making the symptoms worse); 9. Surround yourself with supporting, loving souls; and 10. Never look back, set new healing goals weekly.”

    >And what about me? I’ve been fortunate to have been able to move into a new home - still near to the sea, and with no mould at all - and I am careful to get myself clean after being in any sort of mouldy environment. My health is thankfully still improving - although I still have some ups and downs, and probably still often try to do too much, when I should be taking time out to deliberately rest more - but I’m gradually feeling better, able to do more, work more, and travel more. Which I don’t take for granted, after being housebound for so many years, and when so many of my friends are still very ill.

    >I’ll be back again in a while, I’d like to say more about the effects of our environments on our health, as well as the other treatments which have helped me - but there are already brief summaries of them all, in my other videos on “Get Well From ME”.


    http://www.youtube.com/watch?v=tFDZzZd9s38
     
    COACH likes this.
  2. slayadragon

    slayadragon Senior Member

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  3. COACH

    COACH

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    slayadragon likes this.
  4. ukxmrv

    ukxmrv Senior Member

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    As I understand it Giles claimed to be almost well a while back? He was saying that he was largely better in the first videos he made and the first interviews with him I saw.

    (just making this point in case people are reading a mould avoiding cure to his illness)
     
  5. slayadragon

    slayadragon Senior Member

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    Giles moved from the house where he got sick to a different house near the beach in Felixstowe a number of years ago. Since then, he has had a slow recovery. Avoiding gluten scrupulously has been critical for him. Now that his awareness of the effect that mold has on him is higher, he tells me that the house that he was living in as he slowly recovered was quite good compared to a lot of buildings he encounters, and that the new place he's moved to is even better. And as he said in the video, washing up after going into moldy buildings has been helpful to him too. And living in a town with good air also has been important, he says.
     
  6. ukxmrv

    ukxmrv Senior Member

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    I just wish it was that easy for the rest of us.
     
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  7. John H Wolfe

    John H Wolfe Senior Member

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    Of course mouldy environs are but a small part of the broader experiential picture, but Giles does/suggests plenty of things besides avoiding mould and I take my hat off to the guy for his efforts to share info with the community, and am pleased if the stuff he's been doing has helped him on the road to recovery :)
     
  8. slayadragon

    slayadragon Senior Member

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    Giles is great!
     

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