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Date: 14.05.2016
From: Catarina Amorim

Subject: Interested in learning the science behind your disease and give your side of the issue to researchers?

Hi, I have RA but I was also for many years a biomedical scientists and then a science communicator to make science more accessible to the public. I am a deep believer that knowledge is power. Very recently I became freelance to pursue what I see as very relevant issues, which are not being addressed.

So I was looking into some feedback from you as patients - how many of you would be prepared to take a weekend to engage in dialogue with researchers - this would involve from learning the science behind your disease- mechanisms, diagnosis and available treatments - to understand better how research works, while also having an opportunity to put your points across as patients, and ask the questions you want. The aim is to empower you as patients but also humanise the disease, taking researchers away from the labs to meet the real people with their/ours everyday issues and fears.

I would really appreciate feedback on how appealing this sounds and what would make it more relevant to you.

Thanks a lot in advance
Warm regards
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Date: 16.05.2016
From: Sean

Subject: Re: Interested in learning the science behind your disease and give your side of the issue to researchers?

Hi Caterina,

This is something that interests me a great deal - I have Ankylosing Spondylitis but also have a good deal of knowledge regards other AI disease. Do you have an email address I can contact you on?

My interest in diet and disease started when I was about 19 years old when I was taken to a private clinic in Burghwood Heath in Surrey - and was treated by Dr. John Mansfield. (He later collaborated with top Rheumatologist Dr. Gail Darlington - who treated many RA sufferers with diet for a period of time and co-authored a book)

I later read online about Dr. Alan Ebringer studies in to AS - and the role of Klebsiella bacteria and molecular mimicry. He later extended his studies to RA (purporting that AS / RA same disease, different target tissues, because of different genes and different antigen).

I now treat my disease without drugs using diet changes and my body (back, ribs, feet) shows evidence of previous rampant AS disease process. I am now 50 years old and better than when I was 24.

I have a lots of study knowledge from historical articles that align diet, microbiome, delayed anaphylaxis - then recently reading about the role of insulin resistance in disease too.

I think we can also use the recent studies in to microbiome to explain why some alternatives like oregano oil work and fasting too.

I truly believe that the prize is there for the taking - if different studies are linked and associations made as to what is going on in the disease process.

Put simply - the "trigger" for all auto-immune diseases can be described in generic terms as follows -

"An errant response to antigen (either bacterial or food), cause by a deficiency to regulate the immune response."

In medical jargon - the main areas are "antigen presentation", "molecular mimicry", "epitope spreading", "failed apoptosis"

Therefore the big questions are -

- Does addressing the deficiency help (Minerals (Magnesium, Zinc), Gut Barrier, Hormone Balance (High Estrogen..nb caused by diet too! / low progesterone), Insulin Resistance, Vitamin D)

- Does reducing / eliminating the suspect antigens work? (Proteus Mirabilis (non symptomatic / dormant UTI infections) , Gliadin (antibodies elevated in many AI diseases), Mycobacterium, Klebsiella)

When you link studies - for example you can see why if gliadin causes intestinal permeability in everyone (studies from Fasano et al) and RA / MS / AS / Parkinsons are all in some degree an errant reponse to bacterial antigen from the gut - that going gluten free would be an initial measure to be taken to reduce antigen load.

If you then also targeted known antigens linked to the disease - lets says Mycobacterium for Multiple Sclerosis - with natural alternatives.

Whilst at the same time address deficiencies that caused the errant response in the first place - Vit D, Glutamine (improve gut barrier function).

I also want researchers to embrace other approaches that are proving to be successful - as these tie in with microbiome / diet etc. namely Antibiotic Therapy - I can see that this is controversial - but an open discussion is needed on this as very low doses of AB are proving very successful (BECAUSE THEY REMOVE or REDUCE THE ANTIGEN - either Mycobacterium or Proteus)

I have also become interested in the role of Insulin Response in Diabesity / Blood Pressure and have been in contact with GP's in the NHS that are treating diabetes using v low carb diets.

In the process of weigh loss they have found that other conditions have massively improved! Especially Blood Pressure, Rheumatoid Arthritis.

British Dietetics Association (sponsored by Kellogs and other sugar / grain based industries) are not going to be letting this one become mainstream in the next 20 years either. Not sure Pharma would like Lisiniprol blood pressure medication to become irrelevant either - if IR was the main issue.
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