This post is something a bit different to what you would normally see shared on my blog. Below you will see a guest post written by Jason Bradbury, you may well have heard of Jason, TV presenter ( well known for The Gadget Show) , published author and all around tech geek ( I am sure he won’t mind me calling him that ). As a blogger I get to meet a lot of interesting people at events and on trips, I make new friends and connections and it is a wonderful thing. I met Jason some months ago at an event for the launch of a new projector for BenQ and we got talking and hit it off. I also beat him at archery but that is a story for another day. A few days ago there was a story about Jason and his family in a national newspaper with the focus being his daughter Marnie and Juvenile Idiopathic Arthritis, it was an article that ruffled a lot of feathers and as can sometime happen when things are posted online there were comments and a fair amount of abuse. This happens and as an online influencer it is something I am very aware of. Jason reached out to me and asked if I would be willing to post his response to some of these comments and more information about the subject behind the article itself. I will admit to being hesitant, my blog isn’t controversial and I have always managed to avoid any kind of online abuse or vicious comments. But I thought on it and after reading what he had written I was more than happy to share it. The things is in a strange way I empathise with both Jason and his family and also some of the commenters. I know how it is to have a child who is ill for a long time, Chloe was very unwell for the first two years of her life and still has problems. It is hard, as a parent you will do all you can and look to the ends of the earth for solutions, I get why some of the commenters were upset by certain elements of the article but I urge you to read on and find out the full story. It is important that you acknowledge before reading that this is not my opinion. It isn’t my story. As always I welcome comments but even if you don’t agree with what is written think about what you write before you write it, consider that these are real people with real feelings. Over to Jason:
I don’t have a blog however Becky at Munchies & Munchkins does. She has agreed to host my response to the recent Mail on Sunday article about my daughter’s Juvenile Idiopathic Arthritis. We have no affiliation and my opinions and viewpoints do not necessarily reflect Becky’s.
I wanted to respond to some of your feedback from the Mail on Sunday article and sketch in a little more detail about how we’ve treated my daughter’s JIA – the conventional medicine approach which, as stated in the article, we remain open to – and alternative medicine. Many of the most passionate responses have come from people with children suffering from JIA and related conditions and, frankly, given the direct nature of the Mail’s ‘Chicken Soup’ headline, I can understand the intensity of some of the posts. What I would ask is that you recognise that our family is just like yours – we too were horrified to find our daughter had JIA, we too had sleepless nights thinking about what her future holds, we had the worrying flare-ups and the endless hours in specialists’ waiting rooms and the angst of seeing her undergoing frightening and sometimes painful procedures. I also recognise that this is a highly sensitive subject and I ask that you approach my response with an open mind.
First of all, let me deal with that headline. When my wife read ‘Chicken Soup’ she was, like many of you, concerned that it sends the wrong message. Of all the approaches, we take to Marnie’s health, I wasn’t aware that I placed so much emphasis on any one single element! Do I think the organic bone broth, that we prepare for Marnie each week, is a cure for Arthritis? Of course I don’t. Did I write the article or choose that headline – no. But, if I’m really honest, as a way of hooking interest around an amorphous and deep subject matter in order to present it to a wide and diverse audience, I think it’s quite clever and I respect the journalist’s intentions.
Some posts suggest that my wife and I are clueless about JIA. What I can tell you is that my wife has spent the last six years studying autoimmunity. I would describe her as open-minded but objective and tenacious. What started with three or four hours a day of book and Internet research became a three-year Diploma in Nutritional Therapy at CNM in London. She is now a practicing Nutritional Therapist who specialises in autoimmunity – and she has just started studying to become a Functional Medicine practitioner. She is not a doctor, but many advocates of Functional Medicine are. It’s also important to note that Marnie is also treated and regularly assessed by several other private specialists – and of course there is her regular NHS Rheumatologist and Ophthalmologist who have regular consultations with Marnie and perform a range of their own tests.
I am going to assume that you are familiar with the conventional approach to treating JIA which, in very general terms includes, although not exclusively, Methotrexate/Steroid/Anti-TNF medication etc. In very simple terms, Marnie was on Methotrexate for a year and a half and had steroid joint injections. Her Uveitis was uncontrolled with steroid eye-drops for a year and we were told we might have to go on an Anti-TNF clinical trial. This prompted her mum to seek alternatives. We started our first dietary and supplements approach and Marnie’s symptoms ceased. She had one flare up after a wrist injury but since then she’s been symptom free for two and half years. Could this be down to the lasting effects of the drugs or her growing out of JIA? Yes. But, another possibility is that by addressing Marnie’s gut health and targeting her food sensitivities through testing as well as addressing a viral component we helped her JIA into remission. If you don’t agree with this, that’s cool, but isn’t it reasonable to assume you might want to hear about our approach?
The point of the newspaper article was to explain our alternative approach, so I’m going to focus on that. The easiest way I can think of to give you an understanding of the various complimentary and alternative medicine approaches we’ve taken to Marnie’s JIA is to copy you in on the answers I gave to a follow-up request from one of the journalists (there were two). To be clear, I’m not advocating any one line of action – I’m simply giving you a snap-shot of where we are with Marnie’s treatment right now. Every case must be treated on an individual basis and we take a dynamic and changing approach to Marnie’s condition lead by functional testing, the results of which enable my wife to response to Marnie’s symptoms.
Here are the Tests we do on Marnie:
As well as monitoring her blood with standard blood tests (complete blood, biochemistry, endocrinology, Haematology etc) we check for CRP and ESR inflammatory markers – these indicate if there is an inflammatory process going on in Marnie.
G.I Effects stool test from Genova Diagnostics – this is for infection, inflammation and biomarkers of gut health – gut microbiome, gut inflammation.
The ONE Test from Genova Diagnostics – this test looks at nutritional bio-markers by analysing organic acids, amino acids and oxidative stress markers. It is about looking at Marnie’s functional need for Vitamins, Minerals and Co-Factors. It checks Gastro-intestinal function, cellular energy production and neuro-transmitter processing.
Several Cyrex Laboratories tests including:
Array 3 – Wheat/ Gluten Proteome Reactivity and Autoimmunity.
Array 4 – Gluten-Associated Cross-Reactive Foods and Foods Sensitivity.
Arrray 5 – Multiple Autoimmune Reactivity Screen (so it measures ‘predictive antibodies’ – these are the signs of future disease and possible tissue damage to organs).
Array 10 – Food Immune Reactivity Screen.
Kryptopyrroles urine test which checks for central nervous system problems associated with deficiency in trace elements or vitamins (Pyrroluria).
Great Plains Laboratory Organic Acid Test – Similar to the ONE test (above) offering a Metabolic ‘snap shot’ of the patient’s overall health.
Great Plains Laboratory – Toxic Non-metal chemical profile.
Bacterial and Viral testing – including for Lyme Disease.
23 and Me genetic analysis of Marnie, Claire and I and her grandparents – looking at genetic snips and how they interact with biochemical pathways and how best to support them.
Marnie has her eyes regularly checked by an optician and every four months they are checked for inflammation at Moorfields Eye Hospital.
Marnie’s Supplements and Food Plan.
Supplementation is very individual and it’s important to note that Marnie’s supplement routine is specific to Marnie and lead by her individual test results and symptoms. However, there are some general supplements which we have found are helpful for Marnie’s previous inflammation (Arthritis):
Vitamin D3, Proteolytic Enzymes, Curcumin, Ginger (fresh if possible), Boswellia, A good Pro-biotic, B Complex. A high-quality fish-oil.
The simplest way to explain Marnie’s diet is that it is a whole-food anti-inflammatory diet avoiding processed food and too much sugar. She is Gluten and dairy free.
Breakfast: Marnie has freshly prepared slow-cooked Chicken Bone-broths to help her gut and joint health. She will sometimes just drink this in a mug. She may make herself a Protein Smoothie with fresh organic Berries. When she fancies it she has Organic Gluten-free porridge with nuts, seeds and berries.
Lunch: Marnie usually prepares her own lunch as she really enjoys playing around with recipes. She might have Fresh organic chicken or Salmon or tuna with organic vegetables including carrots, peppers, cucumber, celery and lettuce. She loves chicken stir-fry. If she’s in a rush she might just grate some carrot and add cucumber, lettuce and tuna to a Gluten Free Pita bread.
Dinner: Mackerel or Salmon or Lamb or steak (all Organic), homemade sweet potato fries (prepared in Coconut Oil) with a ‘Rainbow’ of Organic green leafy vegetables – Kale, Broccoli, Carrots, peas. She might have fruit for desert or homemade ice-cream (no dairy just frozen banana with berries)
Marnie keeps up her hydration with lots of water.
Obviously, she doesn’t eat sweets or have canned drinks. Occasionally she has a Gluten Free cake or fresh juice lollies.
For most of the last academic year Claire has run a food and nutrition class for Marnie and three children at our house. The class always included fun food preparation and some aspect of Human Biology/Nutrition. Some of the recipes the children made were: Cauliflower Pizza (Dairy and Gluten free), Healthy Coconut Macaroons, Gluten free Cracker Breads, Homemade Humous, Sweet-potato pancakes.
Marnies take on Courgette Tempura below:
That is some of the information we gave to the journalist and honestly I think she/they did a good job of reducing a lot of detail into easily understandable newspaper form.
I wrote this response because I don’t want to debate all this with you on social media. It might just be me, but I find short-form tweets and Facebook posts are brilliant when I’m discussing retro Arcade Machines or musing over a new electric skateboard but less suited to dealing with something as emotive and detailed as this. I don’t want to get sucked into a social media black hole where the gravity of the topic crushes all reason. I respect your concerns – those penned without aggression and sweary acronyms – but this response is as far as I go, we are away in Europe having started a big family trip and I want to dedicate as much time as possible to my kids. If you are interested enough to read more – its all out there on the Internet. That’s where out journey began, trawling blogs, forums, websites and medical databases for anything that might give us a lead. You don’t need me to tell you the importance of rigorously evaluating each site for quality. If I was to offer a recommendation it would be PubMed. It’s a medical search engine that all but ushered in the era of of free and open access to medical research that has made our treatment of Marnie possible.
When it comes to strongly held beliefs, nothing is going to be resolved in a single newspaper article, or in this follow-up – but I hope you will accept our intention, namely to share what we have found are effective complementary and alternative ways to treat JIA. It’s not just ‘Chicken Soup’, it’s personalised treatment, targeted using objective laboratory data, interpreted by professionals. It’s not for everyone and I’m certainly not suggesting parents ignore the advice of their doctors – if I came across like that in the article then I want to make that crystal clear here. For those of you who live with the condition, you’ll recognise that JIA hit our family hard. The approach we’ve taken in recent years isn’t for everyone, its complicated and expensive, but I passionately believe that the results have been worth it – and that they are worth sharing.
Claire Frearson says
So why not post this in the first place? Why go to the Daily Fail? Getting someone else to post on their blog for you is a touch cowardly. If you really want to engage with other JIA families and share your experiences then there is a fantastic FB group…Juvenile Arthritis Parents and Families UK. Or are you too ‘famous?’
Valetta Moyle says
Thanks for extensive reply, not everyone out there is as intelligent as you. One of the hardest hitting things as a parent of a child with JIA is battering off those who observe you, look in and dont understand, (family and friends), these same people latch onto “headlines” and snippets of advice, like “Chicken Soup Cures…..”. We as a parent, then have to suffer the “Oh you must try this, you must try that. “it’s not just chicken soup..” would have been a much better heading for the article. Or even a follow up article. I am disappointed you feel the journalist was clever, and still back up his choice of heading with the word “cure” in it, come on it’s a bit David Ike ish! Your blog above, explains everything you have done for your daughter, much more intelligently and is less insulting; why oh why didn’t you choose to publish this write up on a more promenant reliable platform/space/paper/magazine (as you have said yourself above, “rigourously evaluating” is crucial) You had the choice to say yes or no to the article as it stood you chose yes Jason. I hope you find it within yourself to find a way (as a public figure) to help with the much needed raising awareness of JIA as a massive “hidden condition”, much misunderstood and unknown about, we need ambassadors NOT miss-leaders. You and your wife sound like you are raising a great daughter, and I wish her continued welness and good health. Kind regards Valetta Moyle.
Christina Pringle says
Thank you for responding and acknowledging those of us that were truly concerned by the headline and content of the Daily Fail article. I truly hope you do understand exactly why we were all so worried! If only it had been handled more sensitively and factually correct by the ‘rag’ (or if only this blog had been published instead!).
Important lesson, if Facebook and twitter are not good for debating emotive and detailed subjects such as this, neither is the Daily Fail!
There was not one parent out there that was not truly happy for your daughter and family that she is in remission (and probably very few of us that hadnt looked into alternative methods of getting there too – and would have wanted to understand in a more factual, less sensationalist way how you got there!), long may it continue! Enjoy your family time.
G E MARRIOTT says
My opinion stays the same. My strong belief as a mother who’s child has almost died from this awful disease as she is systemic, is that your daughter clearly went into remission from using the medicines that are proven to do this for some of our JIA kiddos and for that i am grateful i too have reeearcjed for goirs amd houra days..months and have found zero evidence that diet alone makes a tots bit of difference to JIA in fact in many studies it’s been proven the complete opposite. I still stand by the fact the article was irresponsible as part of a huge JIA parent support group we have had many parents upset because this confused them made them question their decision and treatment some even thinking they should stop treatment…in my opinion the article was misleading and dangerous and it put children’s health at risk. Media is a powerful thing as you know Your writing is eloquent but no where in there do I hear an apology to the people who were upset by this and to suggest the headline of chicken souo cures juvenile arthritis is clever ….then mayne you’re not as intelligent as I always thought you were this headline is not clever witty or smart it’s stupid and wrong and a lie and if only you realised the damage you down within a.community you name your wife and children belong to, and no you didn’t write the article but you did the interview..with the daily mail if all media outlets. I wish your daughter remission for many years to come and I’m glad that the medicines worked for her I am also glad she has a very healthy diet just like many other JIA kiddos who haven’t been lucky enough to achieve remission yet. Regards Ginny Marriott ….a JIA fighting mother
Nicki Davis says
As the only uveitis charity in the U.K., I was very pleased to note that your daughter is regularly assessed within the field of traditional medicine. http://www.oliviasvision.org is always looking for ways to publicise the dangers of this sight threatening disease, would you consider contacting us?
In my opinion the Daily Mail’s headline was misleading and could have reprocussions should people take it at face value. You haven’t done yourself or any of our other JIA families justice by putting you name to this article. With your extensive knowledge and experience of JIA you could have done so much more. It’s a bit of a wasted opportunity. If you haven’t already, what about organising a charity event to publicise JIA and raise money for one of the JIA/Arthritis charities such as CCAA? Wishing your daughter continued good health. After all, that’s all any of us wish for.
Just a quick note to the site owner and to Jason & Family. A massive thank you for posting this information. For all the negativity you will encounter there are some people who really appreciate you posting this information however trivial it might seem to some. These snippets help piece together the puzzle for people like me with failing health knowing deep down that the gut is the root cause of it all.
Alex Corning says
nice artilce , thank you Admin . keep it up have a great day
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