Update: Rituximab, Locations Effect, etc

A short update about the funding announcement for a Rituximab medical research trial for ME in Norway, fundraising for a UK trial, a petition to allow severely ill patient Karina Hansen in Denmark to leave hospital, a study about toxins from mould in patients with CFS in America, and a new Facebook page about the "Locations Effect".


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 I think are interesting.

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 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 now launched an appeal, to fund a Rituximab study to be carried out in the UK by “Invest In ME”. As well as that, they have 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 who became ill with ME when she worked in a school with a toxic environment in America, then moved to the Alps and says her Chronic Fatigue Syndrome is a lot better now, although 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 - but obviously not processed 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 supportive, 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 as soon as possible 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 all those, in my other videos on “Get Well From ME”.

Let's Do It For ME - http://ldifme.org/
Karina's petition - http://www.change.org/petitions/karina-is-a-severely-ill-me-sufferer-forcibly-removed-from-her-home
Mold toxin research - http://www.mdpi.com/2072-6651/5/4/605
Locations Effect Facebook page - http://www.facebook.com/LocationsEffect