Talking to NRAS about diet

I advocate a good diet (and in this context I don't mean a Mediterranean diet, which I think of as positively damaging for many people with arthritis) halting and possibly reversing the damage of arthritis, initially in conjunction with drugs, but for many without drugs.

I would like to talk to NRAS person-to-person about this, especially after the betrayal series. If anyone wants to join me on this then please contact me andyswarbs at gmail dot com, cheers.

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  • Dear Andy

    If you'd like to speak to anyone at NRAS we can be reached on 01628 823524, or you can email me at clare@nras.org.uk to set up a visit to NRAS offices to discuss your ideas. I'm sorry I am not sure what part of the country you are in but if not close to Maidenhead then perhaps a call would be good.

    Kind regards

    Clare Jacklin

  • Many thanks Claire. I live in Oxford, so maidenhead is not a problem. I'll call and arrange an appointment.

  • Hi andyswarbs,

    Good idea, would like to join you๐Ÿ˜Š I will pm my email address.

  • I can't say that I agree with you about the Mediterranean diet - it has benefited me personally - and that is one of the difficulties that I have about dietary advice - people seem to vary so much in their response.

    So what may seem to be obviously marvellous for you personally, and you want to tell everyone about it, may not help someone else, and indeed make them feel that they have somehow failed to respond. Be gentle with those who are different!

  • I'm on a Paleo-Med diet and while early days, I think it's helped - although not the last few days as I've a flare. It was markedly acute on the first day but has ameliorated to the point where I wondered if it was actually a flare. But after a walk with the dogs, I'm suffering.

    I have to posit that removing all the usual suspects from your diet is most likely to make a noticeable difference to symptoms. It will definitely make a difference to your general health too.

    What I'd like to see with the diets is reports on those who have *not* benefited from the extreme diets. We constantly hear testimonials about those who it's helped, but are there none who have not had benefit? Or would that all be down to poor compliance on their part?

    Additionally, I'd like to know what other actions those who have had benefit were doing at the time. They could have started new drugs, stopped other drugs, changed their activity levels, moved to another part of the world but I haven't found any lists of corollary actions which could have also helped with a change in symptoms.

    I'd like to see some results from double blind trials (or trials with control groups) from independent sources.

    As suzannedale said, she'd eat cat litter if it was going to work - to add to that, I'd eat USED cat litter if it would work!

    MJ

  • Let's face it....if ANY particular diet had been confirmed to help RA by controlled clinical studies it would the first thing every rheumatologist told a newly diagnosed patient.Even allowing that foods affect people differently there. seems to be nothing but personal statements on how cutting out a food has helped.

    I really do wish there was a diet that worked, I'm sure like everyone in this site we'd all force ourselves to eat it to get rid if the pain.

  • That's the point. Despite considerable proof - they do not.

    Do you remember when doctors used to smoke (even in their surgeries) and advise people to smoke to help them relax. This was despite mounting evidence, including many many deaths and chronic illness worldwide. The tobacco companies were skilled at suppressing evidence or obfuscating it.

    The current situation with auto-immune diseases, in my opinion is very very similar. Drug companies have a gravy train of continuing medication for the rest of patient's lives. So funding careers for rheumatologists and their research departments to understand drugs better is in their interest.

    I am not saying doctors and rheumies are bad at their jobs or do not have the best motivations at heart. But there is a solid brick wall which we have to dissemble brick by brick.

  • As we all know the answer is money & the profit margin for research.....it should come from public funds not private...hence get some funds back for further work when the research come good, but in the present state of the NHS it doesn't look very hopeful does it?

    Look how expensive Biological drugs are - because it took so much research to perfect them....now we have the copycat drugs entering the game & they are supposedly half the price but just as effective....brought about by research whose original patents are now expiring.

    Until ALL auto immune diseases are recognised by the general public as the painful debilitating disease we all know they are, there is no chance any company will embark on specific RA diet research.

    I expect we have all received "that look"when we say we have an auto immune disease which becomes sort of sympathetic when we say it's RA & not AIDS.

    Re smoking & cancer...my grandmother had breast cancer in 1947. The first thing the medics told her was to stop smoking...70 years ago......so it really makes me angry when people suffering from any form of cancer say they " didn't know" they should stop. Recently I watched a TV programme on how behind we in UK are on cancer research.....but if people don't listen & take medical advice....same goes for over eating & drinking......& only start taking medical advice when it begins to hurt.....what chance any more research funding on anything?

    Education is needed from a very young age so that young people take more care of their health & in the long run we with RA/RD may benefit.

  • Not sure I can agree with your conclusion. This is not just a gang of gluten-free addicts touting their addiction. This is a well thought through theory with a mass of evidence-based research.

    I will give you one reference, โ€œThe Health Advantage of a Vegan Diet: Exploring the Gut Microbiota Connectionโ€ ncbi.nlm.nih.gov/pmc/articl...

  • wroad - very good analysis

  • Thanks for taking the time, & having the patience, to do this Rena. Very helpful. Words are powerful, statistics even more so, lack of them frustrating.

  • If someone gets relief from going gluten free or vegetarian I am very happy for them.

    But if you can access the iplayer watch today's episode of Rip Off Britain about companies advertising they can test you for food allergies/ intolerances....at great expense of course!

    A medical doctor said don't waste your money.....the way these tests are carried out cannot scientifically test anything!

    A lot is In the mind...how many of us have had a good nights sleep, which we put down to the new sleeping pill ...only to find it on the bathroom shelf in the morning?

  • Doctors have eyes & when they see someone huffing & puffing as they waddle into the surgery, surely a word & information that the patient's breathing would improve if they lost weight!But obese patients think this advice means everyone else not them.

    I'm sure w've all got size 22 friends who insist "I eat like a bird" as they scoff the double burger & chips.....It appears to be the reverse of anorexia nervous!

    Of course there are people who have serious health problems.....one of my male friends has grown from a reasonable 13 stone to 20 stone ...he has seen doctor after doctor & they cannot get to the bottom of it!

    I don't advocate a "DIET" if you have no proven food intolerances - but eating sensibly to control weight is surely a no brainer!

  • All my entire adult life I have felt overweight, and indeed been so - never clinically obese, just on the heavy side - despite doctor's advice. As with many people tried various diets, all without log term success.

    Punch line - now I am down to just inside my ideal BMI and I hardly ever feel hungry. Add to that restrictions such as "no" oil and perhaps someone might describe me as gaunt one day!

    So even if diet has no significant effect on RA I am in a much better place. I have never ever felt healthier, despite remnants of my RA such as a right elbow that likes imitating a right-angle.

  • Well done...I'm sure you will cope with RA better without the constant worry of what you eat.

    Luckily I have never been overweight.....but thanks to Leflunomide I'm now underweight... just don.t feel,like eating...that's life I guess !

  • There is a group of people on the Paddison Program who are ex-paleo dieters. There seems, and I am not speaking from experience here, a time limit beyond which the efficacy of the paleo diet wains. Some have talked about a year.

    I agree also that efficacy of a diet depends a lot on determination of the individual involved. Until two years ago I had no interest in the subject since my PsA was held easily at bay with a minimal amount of NSAIDs. Then May 2015 RA went haywire until by Easter 2016 I was considering suicide. Before I started PP I had removed some things from my diet - coffee, gluten, alcohol and had started to increase my veg intake. But I had no route forward and was floundering badly.

    Like you say anything that costs money upfront needs to be justified. I thought the relatively small cost of Paddison Program was worth a punt, and as you know I have not looked back.

    I would love a large scale double-blind trial as well. I will raise that with NRAS.

  • Important to make a distinction between Paleo and AIP.

  • lol re: the cat litter.

    I think the paleo AIP is worth a shot. For me, stress & too many cheats pulled me right of that extreme diet, and I just haven't been able to get on. When I am too sick, I will eat whatever is easiest. When I am too tired, I will eat whatever is easiest. When I feel great, I don't feel the effects of a poor diet as acutely, lol. Half the time, I think anyone who eats "junk" is crazy, and the other half the time I tell myself, "you only live once, and what's life without x, y or z."

  • Ah, I can hear the rationalisation cogs from here. Mea culpa, mind! :-)

    I recognise the thoughts: when I think I've been good, I think I'll have that ice cream! Oh yes I wiiiill! Lovely. Not just any old bottom of the freezer rubbish, for sure. Lovely Devon cream, ice cream. Mmmmm!

    The next morning... ouch, my hands a bit stiffer, taking longer to get moving, have I slept under a heavy troll last night? ... no, I slept with ice cream in my belly. Sugar.

    Serves me right. Having a mixed-science background, I need to have conclusive evidence that the things I think are bad for me, are actually bad for me. I do like to run tests frequently and repetition is key - to ensure consistent results.

    And what's life without ice cream?!?!

    MJ

  • Haha, right! Things I've discovered for myself through my dabbling in paleo (& autoimmune protocol):

    Gluten and I are NOT friends.

    Dairy and I are NOT friends.

    Sugar and I are NOT friends (more like abusive life partners).

    Wine and I probably shouldn't be friends. We're more like star-crossed lovers. I blame methotrexate, and now leflunomide for their jealous monopoly of my liver function...

    :)

  • I think we might have something here----- I love my Magnum every day, its my treat to eat ever so slowly. BUT, when I don't have it, I have so few symptoms the day after, I thought I was imagining it. I also took to making my own icecream, with only 3 ingredients thus reducing quantity of sugar and using low fats. Surprise, minimum symptoms again. So what's in shop bought icecream?

  • Dairy ... sugar ... and I think sometimes something called carrageenan moss. (Although derived from seaweed, it is supposedly very inflammatory. You have to watch out for it in some almond milks too.)

    But I miss my daily Ben and Jerry's. For me it was the cookie dough I was particularly exorcising from my diet.

    Frozen mashed bananas actually make quite a nice ice cream substitute. Not quite up to Ben and Jerry's standard though.

  • Just look at the list of ingredients of the most popular vanilla ice cream in the UK: Cream (34%), Water, Condensed Skimmed Milk, Sugar, Free Range Egg Yolk, Vanilla Extract, Stabilisers (Guar Gum, Carrageenan). Sugar, Vanilla: traded in compliance with Fairtrade Standards, total 15%.

    & the third: Reconstituted Skimmed Milk, Glucose Fructose Syrup, Sugar, Glucose Syrup, Coconut Oil, Whey Solids (Milk), Stabilisers (Locust Bean Gum, Guar Gum, Carrageenan), Vanilla Bean Pieces1, Emulsifier (Mono- and Di-Glycerides of Fatty Acids), Natural Vanilla Flavourings1, Colour (Carotenes), 1Rainforest Alliance Certifiedโ„ข

    & the fifth: Fresh Cream, Condensed Skimmed Milk, Sugar, Egg Yolk, Natural Vanilla Flavouring

    (This isn't in reply to your naughty but nice treat 1goldie, just one reason why I look at the ingredients list of everything I buy that's not fresh!) I've chosen these particular ice cream brands because they're the most publicised of ice creams, others the top 7 include supermarket's own brand (non-specified) & Magnum.

  • what can I say? --------where's the bucket, yuck!!

  • When I worked a night shift I always ate a chocolate bar in the car on the way home to keep me awake!

    Always woke up,with a headache. Went abroad where the chocolate was ghastly...started eating an apple instead.

    No more headaches.

    Could be coincidence & now I actively dislike like chocolate...but I can eat crisps til I burst!

  • "she'd eat cat litter if it was going to work - to add to that, I'd eat USED cat litter if it would work!" Underlines the power of RA to turn absolutely anyone into a total wreck.

    As for Paleo vs Vegan here is the Plant Based News perspective, including accepting that Paleo can be effective initially.

  • Hello oldtimer, Perhaps it's not a question of advocating the one and only best diet for everyone with AI, but rather identifying the goals of dietary modifications, finding the foods tha trigger inflammation in you. And here we have our individual triggers. New research has come to help with this detective work by having uncovered some of the most common triggers like gluten, dairy and suger. New research has also uncovered the central role of gut health and our microbiom for normal immune function.

  • Any links you can provide? My nutritionist is convinced about the role of 'leaky gut' and I'm on the programme.

    But I'd like to see some evidence... I have seen a video / slideshow provided by the diet supplement company but any others?

  • newsroom.cumc.columbia.edu/...

    Here is the latest research on gluten sensitivity, leaky gut and the connection to autoimmune reaction, done by Columbia University.

    A comprahensive list on all research done on the subject can be found in Tom O'Bryans book "The Autoimmune Fix". Hope this helps๐Ÿ˜Š

  • Thanks for the link, Simba.

    Some comments, which I think you *may* agree with:

    "In future studies of NCWS, Dr. Alaedini and his team plan to investigate the mechanisms responsible for triggering the intestinal damage and breach of the epithelial barrier and to further characterize the immune cell responses."

    This is at the end of the interesting article and that's the interesting part for me. I'm having difficulty with the idea that part of the gut is becoming permeable for reasons yet to be defined. The inference I'm getting is that the cell walls have broken down a bit allowing transfer of undesirable food components to cross into the blood stream.

    Why does the disease process involved stop? Would it not progress to a state of severe deterioration? Clearly it does with some people, like those suffering celiac disease, yet not progress for others - notwithstanding there *could be* two entirely different disease processes at work there.

    I'm not contra the idea of a permeable gut problem. I've just seen too many examples over the years where the obvious answer is not the correct one. Prudence, curiosity and circumspection are useful. "If you end up on the island of conclusion, it's very hard to get off it."

    As it's suggested to be an auto-immune issue I'm not sure we will have a clear answer at the end of it. Witness all the variance in responses to interventions on this site.

    Having stated caveats, I'm VERY interested in these possible explanations on a cause of autoimmune unbalance. What of DNA profiling to help isolate specific approaches for types of individuals? Not only would that help with targeting therapies that will work for individuals - and not stressing others who would not benefit - the cost savings on treatments could be a positive effect.

    Interesting stuff.

    Anyway, here's the links to the commercial gut profiling service. MODS - delete if not appropriate! You will need to filter out the promotion of their service (which is about a assessment process to find out about your gut health). The exploration of ideas is what is of interest to me.

    gdx.net/clinicians/medical-...

    MJ

  • Thank you MJ for your interesting reply. Yes the players in AI diseases are very complex, gluten sensitivity may also be about genetic disposition but there is also a huge number of research on how gluten effects our gut and how it's always a strain for the gut. The most comprahensive list of all research on this subject you can find in O'Bryans book.

    New research has more and more information about the underlying mechanisms and players in leaky gut. We know that anti- inflammatorys are often one of the culprits in the development of gut permeability. We know that the gut lining renews itself in 7days or faster. In other words the body is constantly doing repair work. But if the toxic load becomes too heavy and you at the same time have other deficiencies in your immune system the repairing only works partially. When the allergens, that have leaked into your bloodstreem accumulate it is like throwing gasoline on fire and making it even harder for the body to function normally. Gut permeability it seems, is something that does play a part in the autoimmune reaction and if we have means of calming down the ongoing inflammation triggering process in our gut through dietary modifications, what couldn't be better! This does not mean that by changing your diet you will be cured but it does mean that you may with a quite high probability, be able to decrease inflammation. What's even better is that everyone can try it, it is not expensive and it is not toxic.๐Ÿ˜Š

    Thank you for the link. I found it quite interesting and an important support for the knowledge about gut health in AI.

  • Thank you for posting this oldtimer because I'm just the same as you, the Mediterranean diet works well for me as regards my inflammation. I have in fact had this conversation with andyswarbs who thought 5 things were worth me exploring, 4 of which I include in my diet & which don't affect me adversely, though he's of the opinion they ought to, the other I eat very rarely by choice & when I do it's as a last option.

    I agree, be gentle to those who are different, so often here we hear we're eating wrongly yet it's the diet recommended by the British Society of Rheumatology, EULAR, NICE, NRAS & other charities. The Complementary Medical Association recommends the Paleo-Mediterranean diet for all chronic conditions & associated diseases, they wouldn't all do so if there was chance it would harm us all, as appears to be the underlying thought.

  • Well said NMH โ˜บ

  • I think you have to take into account which drugs we are taking. A controlled trial couldn't possibly work unless everyone was taking the same meds....it would not be controlled otherwise!

    I have had RA for 17 years & from choice eat quite a bland diet. I have never been able to associate a flare with anything I eat. Even when I go abroad & eat different food & drink different water the only affect I have noticed is in some places plain old tap water causes an allergic skin reaction.

  • I like that reply old timer โ˜บ

  • Many people with RA can live on a med diet very happily, and I am very glad for you that you are one of them and that you have found a diet that works for you. Finding the right diet is key. Well done.

  • Hi,

    I am going to add my 'pennies worth' and say that just because one person thinks one type of diet is damaging it should not be excluded from a serious discussion about diet and arthritis/RD. For me the statement highlights the frustration of the lack of serious and systematic studies into the interaction of diet and disease where the study is carried out in a non-bias and scientific manner (double blind, control group, enough individuals taking part, over a significant length of time etc). With out such a study all we are left with are our own opinions based on our own experiences which may or may not generalise across the whole populous with a given condition.

    So Yes I am very interested in talks taking place about the role diet has is disease intensity and progression but only if the talks are open and don't exclude avenues of interest/discussion because of individual biases.

    Thanks

    Ali

  • See link above to study done at Columbia University recently.๐Ÿ˜Š

  • I would be very interested in the results of you meeting, live to far away to attend. Very interested in diet and have found the benefit of going gluten free for my RA and hashimotoes, disappointed with my latest Dexa scan results, possibley because of long term steroid use. Will be having a full review for my osteoporosis in January. Good luck.

  • Hi Andy, I agree with you re diet and RA, I have been following the Clint Paddison Programme which is basically vegan, no dairy, no eggs, no oil. You gradually introduce certain foodstuffs back into your diet which I had been doing and strongly believe I had a chronic shoulder flare due to trying Miso paste which is soy based. This resulted in my having a steroid shot to remove the pain, however cannot continue to progress my diet until the affects of the shot have worn off, because I would have no idea what I am reacting to. I have not seen the betrayal series yet but understand the concept, it seems there is a growing number of doctors and specialists who agree about the 'leaky gut' theory, unfortunately not many Rheumatologists! I believe it is certainly worth a shot, yes my diet is restrictive but I would do anything to help fight this disease and get off meds! I would rather have a life than be worried about the things I am missing out on in terms of food. My diet is probably more nutritious than it ever has been and I am never hungry. I am a keen advocate of 'juicing' vegetables mainly which I drink at least a pint of every day. I was not born with this disease, something happened inside me to cause it, so it must be reversible if you can find the cause no? I am happy to join you and will send you my e-mail address.

  • well said

  • Hi, Ladymum! ๐Ÿ‘‹

    Nice to see another diet & lifestyle implementer about! ๐Ÿค—

    There's a few of us: Mlagypsy ( healthunlocked.com/user/mla... ), Shaun94 ( healthunlocked.com/user/sha... ) & of course, andyswarbs ( healthunlocked.com/user/and... ), & others! ๐Ÿ‘

    We're here! ๐Ÿ˜† ๐Ÿ™ƒ (We exist. ๐Ÿ˜‚ ๐Ÿ‘ )

    ______

    Couldn't agree with you more, point-for-point in your reply. ๐Ÿ‘

    You've nailed it at every turn! ๐Ÿ™ƒ ๐Ÿ”จ

    ______

    [Laughingly (perhaps not so funny in the moment) -- I'd same reaction to Miso paste! ๐Ÿ˜ณ ๐Ÿ˜ Miso is just so delicious; I kept trying to re-introduce it periodically without getting 'a reaction'. (Well, after a good long while of the 'tub of miso' quietly ๐Ÿค sitting in the fridge, I gave it another go & 'so far, so good'. ๐Ÿ™ (Not 'pushing it', but it was a delectable treat to be able to 'savour the flavour'. ๐Ÿ˜‹ ) ]

    ______

    Hope your shoulder has simmered down & your doing well, Ladymum. ๐Ÿ™ Take good care. Wishing you (& your beloveds) the very best! ๐Ÿ™ ๐Ÿ€ ๐ŸŒบ ๐ŸŒž

    .

    Kind regards, โ˜บ๏ธ

    Kai

    .

    [I tried sending this to you as a PM (Private Message) ( support.healthunlocked.com/... ), but no luck. Received 'error message' when trying to send.]

  • I have a fairly terrible diet usually, but funnily enough my RA started around the time I had completed a 45 day juice fast and about three months of eating strictly Vegan. So that kind of goes against the logic of diet for me at least, back to standard western fayre and I'm no different, but it definitely showed itself when eating plant based.

  • The Vegan diet was not originally made to decrease inflammation like Dr. Sarah Ballyntines AIP and Dr. Terry Whals diets that were built up on biochemical evidence and scientific understanding of cell metabolism and their dysfunction in AI diseases. These diets target and support normal immune function and are especially triggered to heal permeability in the gut and elimminate allergens and through nutrient dense food give the best possible enviroment for cells to function.

  • Not sure that the 45-day fast or the vegan diet being a trigger proves very much. I blame the coincidental death of my Uncle and my son's Wedding Party last year as the trigger for my RA. However friends and family close to me say it may have been a delayed reaction to my 24 yr old daughter's death 4 years earlier!

    May I ask what kind of vegan you were? There are lots of vegan foods out there that I would not, and indeed cannot, touch with a bargepole. I cook 99% of my foods from scratch. The 1% is when I am in a restaurant - and even then I have been known to take along "something", just in case.

    One final note. I would never advocate changing a diet overnight. Not sure if you did that. But both body and mind need time to acclimatise, so incremental changes are best.

  • I wasn't ever a Vegan, but I was trying to lose weight, the plan was the juice fast, then to a plant based diet for 3 months, then to reintroduce other foods with an outlook to being healthier. I don't think this was a trigger, I just think it's odd that when I was eating the healthiest and exercising the most I ever have in my life, was when I was starting to really be affected with RA. Makes me think that diet and gut aren't necessarily everyone's problem in relation to RA. Personal experience only of course, but it seems the be the opposite of those people that cut things out and find some relief.

  • Thanks. Stress is a common trigger, that is for sure. And doing the fast might have been yours.

  • This is a very interesting and thought provoking discussion -thanks Andyswarbs.

    I did watch most of the Betrayal series while it was available for free. I dislike the title greatly and still do not get why the young programme maker went on about being bullied at school in the first programme? I felt that there was too much unverifiable smulch and instinctively felt there were some very dubious personal agendas at work.

    To my surprise I found that I had once known one of the guests, an oncologist who made his millions out of founding a company which produced and sold some kind of canned protein mush in order to prevent cancer. He commissioned several artworks from me and recommended that I start painting myself in the nude. He invited me and my family to go and stay in one of his luxury homes with swimming pool in LA. I felt wary even back then and didn't take him up on his generous offer.

    I feel we should be sceptical of people who are part of a multimillion dollar industry and were using this series to promote their best selling books. Big Pharma and the Betrayal lot have a great deal in common.

    And titling this series "Betrayal" is insulting to many of us who are endeavouring to find our own way through the long and complex journey of autoimmunity. Personally I am quite interested in the Leaky Gut theory and I take in as much of the science as I'm able to as a non scientist, in order to track down my own triggers and eliminate them.

    But I don't want to be made to feel that, by taking immunesuppressant drugs, I'm betraying my body. Nor that I'm the victim of some huge conspiracy on the part of Big Pharma or the medical profession if I do. And heck knows I've come across some awful doctors in my time and have very good reasons to be fearful of all medications.

    But we are all have our own unique histories and triggers so no one diet is ever going to fit all.

    For myself, trying to eat only wholesome foods, drink a lot of water and watch my vitamin and mineral intake, try to get my weight down and ensure I am getting the right amount of good exercise and get fresh air is the best I can do if I want to have enough hours in the day to be productive and creative and earn my keep. Spoons will always be in short supply so I have to prioritise and find my own ways to get more. I've just started a fifth immunesuppressant drug.

    It's a very personal journey for each of us and speaking for myself I don't need extraneous baggage in the form of large and expensive coffee table diet books expounding scientific facts and theories that I'm not equipped to affirm or refute.

  • No-one should ever apologise, or feel they need to, for taking the drugs. This is an awful disease. Actually awful is far too weak an adjective.

    One of the avenues I may be raising is the significant links NRAS itself has to pharma. See nras.org.uk/financial-infor... for instance.

  • Well all charities need funding Andy so it's a double edged sword. The EULAR and ACR congresses are largely funded by Big Pharma.

    But then people like Sarah Balantyne are profiting immensely from their Paleo or vegan diets or whatever. But are they also actually campaigning to stop mass pesticide use, or preparing to fight Trump to prevent his proposed plan to reopen coal mines across the US? I really don't know - perhaps one of them should have stood for presidency if so? I wish they were all as accountable as NRAS and other UK charities have to be and would stop dissing the pharmaceutical industry and start showing us what they are made of rather than promoting their books on a gluten free diet at the expense of us all.

    NRAS certainly has an excellent helpline which won't come cheap - lines open run every working weekday throughout the year. Would there even be an NRAS if it weren't for a certain % of Big Pharma funding? I doubt it.

    And how do you propose that small charities serving those with relatively rare connective tissue diseases such as Lupus, Sjogren's and Scleroderma and Vasculitis continue without support and advice of wealthy benefactors from the medical profession and pharmaceutical companies? These related diseases are very rare so the charities are tiny and need all the funds they can get.

    And equally where do the foods the Betrayal people promote come from and have they been genetically modified, as most food products sold in the US are, or do they all use their profits to create wonderful organic farms with free allotments for those with AI diseases perhaps? If so why don't they make a documentary series about this utopian dream made real and call it "the Alternative" rather than fearmomgering in order to promote their businesses?

    I have heard it said that Venus Williams, whom I share a disease with, is actually on Rituximab infusions - although she says in interviews that she keeps her primary Sjogren's well managed by veganism alone. How much does anyone appearing on the Betrayal series actually have to disclose about themselves?

    As I've said the Betrayal series requires people to pay to watch it now. I also know doctors who have left working for the NHS to set up lucrative private practices as functional medics. The problem is that these practitioners are unregulated and unaccountable so it's impossible to know if what they are saying is scientifically worthy or not or whether they are total charlatans motivated solely by greed or the desire to become a new kind of cult leader? Paddison and Mercola - what do we really know about them or their motives?

    Double blind trials are the only way to prove their theories at the end of the day - and these cost a lot money to run on any notable scale. Until these people are as transparent as most UK charities have to be - then I reckon it's all just about global politics and profit/ greed. And if it isn't then who do we, the sufferers, believe if they don't have to disclose how they make their money?

    I personally choose to trust my instincts about everything I consume now. I haven't got time, intellect or energy to take on the world and am just glad I have people on the other end of the phone (in my case the BSSA helpline these days) who can let me talk through my worries when I need to. I dont really care how they come to be there any more than I care who funds the Samaritains! As long as the charities ombudsmen i.e. the Charities Commission etc require them to be accountable in order to survive then that's enough transparency for me.

  • Ps and regarding this idea that autoimmune diseases are on the rise. Could it actually be that people just lived and died with these diseases for centuries, but now we know more about the autoimmune/ inflammatory process (still not nearly enough mind!) and have created diagnostic criteria and drugs to modify etc? And this means that people are living much longer with the same diseases and so it just SEEMS as if this is an epidemic?

  • Yes, I do wonder the same thing TT. Interesting.

  • It seems that the rise of AI diseases in younger people is the real big worry.

  • And do you know if there is real statistical evidence that more young people are getting autoimmune diseases? Or is it actually that more are being diagnosed?

    For example is JIA, a rare form of RA affecting children, actually increasing, or were children just abandoned to their fate more often than not in previous centuries? This is the kind of fact-led research I would like to know about, rather relying on sweeping statements made by the Betrayal programme makers.

  • A question for the "More or Less" Radio4 programme?

  • I haven't seen any evidence of the rise in autoimmune diseases in children. Are there any reputable statistics on this? As Twitchy says, do we not just diagnose more these days?

    I have reservations about the autoimmune paleo protocol, particularly for people with inflammatory bowel disease which affects my loved ones. The foods they are recommending to cut out are often very important for people with IBD to eat. They may be advised by their doctors to eat low fibre, high carb. The diet (of meat, fish and veg) is not very digestible and may increase their transit which is the last thing someone with IBD needs.

  • Quick google search shows medicalnewstoday.com/articl... indicates a 23% rise in type 1 diabetes between 2001 and 2009.

    Also ncbi.nlm.nih.gov/pmc/articl... and talks of "an 30 fold increase of primary biliary cirrhosis" as one example.

  • That doesn't specify age though, nor does it acknowledge that improved diagnostics plays a role. Obviously, more adults are being diagnosed but it says it may be environment. Why do people always extrapolate that to mean "diet"? It may be a factor. There is no exact science. In fact, I don't see much science at all behind some of the pushes in these alternative suggestions.

  • PBC is quite common secondary to Sjogrens - which was only recognised as an independent disease in the 1930s and is known to be very under diagnosed. It is also more commonly found in an ageing population.

  • I am always amazed and very saddened when forum members here and elsewhere struggle to get a diagnosis. My reaction I guess is cause by , I guess, that until they get a diagnosis then no treatment can be "safely" offered.

    I wish I had the access to do a summary of this forum (and poss related others). Questions I would ask include "New here, awaiting diagnosis" and "xxx-drug was working but now it isn't." Also perhaps how many people have tried diets - and failed/succeeded. I think NRAs forum analysis is a possible course of action for some volunteers. I'll add it to my meeting agenda. Are others here up for it?

  • This is a HealthUnlocked community admistrated by NRAS rather than a charity forum Andy. I know it's a subtle distinction in some ways, but what it means, in relation to your ideas and future conversation with NRAS, is that people can use it regardless of whether they are members of the charity. This applies to all HealthUnlocked communities.

    In my experience the HU community that attracts the greatest number of "shadowlands dwellers", (as I call those who are undiagnosed), is actually Lupus UK's HU. There are also users of this and other connective tissue disease HU communities who have diagnosed diseases such as Sjogren's and PsA, but who don't have a dedicated UK HU so come here because Lupus and RA are actually several or many diseases under one umbrella title.

    Even those with firm diagnoses are sometimes left untreated or have no dedicated community they can come to for support. Seronegative RA is well recognised by doctors but Seronegative Lupus is not. And so this is another big problem that charities face when releasing statistics, but also being well aware of this postcode discrepancy, from HU users.

    For example in Scotland seronegative Lupus and Sjogren's are almost completely unrecognised by rheumatologists where the London Lupus Centre will diagnose a few people who are antibody negative. A previous rheum of mine said that this cannot happen in Scotland where EULAR criteria are adhered to rigidly, and these English diagnoses are made purely because certain numbers are needed to meet requirements for research funding. Which probably leaves many seronegative people undiagnosed, or according to this rheum, quite a few who are diagnosed incorrectly! This means that RA is the most commonly diagnosed of the rheumatic diseases but not necessarily the most common or prevalent disease?

    Getting back to the question of public health messages and whether we are seeing this great surge in autoimmunity as the Betrayal series claim; I was reading somewhere that those who survived the 9/11 tragedy are increasingly suffering from autoimmune diseases. Simultaneously to reading this I received an email from a famous human rights organisation, asking for signatories to stop foreign companies committing human rights abuses and causing environmental devastation in order to mine in Peru. Water is an increasingly valuable commodity and ridiculous amounts are used to grow avacados in very dry parts of Arizona. Therefore how ethical is it to be promoting avocados as a key food in an anti inflammatory diet?

    This led to me thinking that the whole fixation with specific diets curing autoimmunity may well be a great big, highly profitable red herring. Of course our diet will influence how we manage our diseases. But shouldn't these so called "scientists" and epidemiologists be focussing their efforts on how best to deter man made catastrophes from occurring if they are genuinely keen to prevent cancer and autoimmune diseases from escalating? Does it really make any difference if a non Coeoliac person eats food containing gluten? Surely it's the much wider environmental shifts that are more likely to be influencing the rise in cancers and autoimmune diseases, rather than whether or not sufferers follow a Mediterranean or Vegan diet?

  • pubs.sciepub.com/ijcd/3/4/8/

    This may also be of interest. In the Betrayal series they also had a chart over the increase of AI disease. You may have whatever opinion of the program but I am quite sure they would not have presented erronous facts that could have been checked. ๐Ÿ˜Š

  • Please see my thoughts above if interested Simba.

  • If the choice were to have the current situation of sponsorship and surviving to provide support, vs., no sponsorship and no support I'd choose the former (from someone who is very concerned about big pharma).

    Once I know there is sponsorship I can use my brain to guard against undue influence. If there is no obvious sponsorship, I'm also circumspect...

  • As far as I am aware, NRAS depends far more on its membership and other sources than it does on sponsorship from Big Pharma. So criticising them for relying too much on pharma sponsorship on this forum might end up being a very big own goal I suspect.

  • It is not a matter of criticising, rather asking where the line is drawn. For instance would a charity feel comfortable criticising a sponsor? NRAS are open about their sources and their criteria, but I would like further clarification.

  • As they have said themselves on this post, I think they will be more than happy to speak to you about this.

    But I just thought it worth pointing out to others who may use this HU, that charities need as many paid up members as possible and the more people here join and are proactive as members, as you seem to be, the less NRAS will need its pharma sponsors. They should be accountable to their membership too so it's the best way to try to bring about change without risking throwing the baby out with the bath water, so to speak.

  • You are totally right, running helplines is not cheap. Running any organisation is not cheap. In the UK we are protected from many costs by our NHS.

    As the joke goes, the most excellent "Breaking Bad" which runs to 8 series if made in the UK would not last one episode. A single episode showing Walter White getting his cancer operation on the NHS, end of story.

  • Btw while we are on the subject just in case anyone is under the notion that the Paddison Program is a complete moneyspinner, and the only reason it exists is as an earner, check out Clint's other career clintpaddison.com/. That's my guess as to how he lives. Yes, I am sure he would love to be able to devote all his time to RA diets et al, but right now it is more of a project to give something back.

  • To counterbalance this Andy - here are some links from quick research that a user of a different HU community found regarding a few of those who appeared on or whose work was referred to in this Betrayal series;

    "1. Dr Mark Hyman. Who, it turns out, has no professional training in nutrition and no clinical research experience. His claims that he can "cure" autism are comprehensively debunked here - nodesci.net/blog/2015/07/15...

    2. Jeffrey Bland - who has been censured on numerous occasions for making false claims about the "nutritional cures" he sells - quackwatch.org/04ConsumerEd...

    3. Liz Lipski - a nutritionist who is apparently a graduate of Donsbach University - a correspondence school with a highly dubious record - and who is associated with other organisations promoting "unorthodox" treatments for autism."

  • Is it just me or is it getting quite difficult to follow the threads here! The HealthUnlocked forum indenting and replying seems to be working against us. IMO, I think between all of us we have had / are having one of the most important debates - and technology fails us at this moment.

  • I do agree that it's a terribly important debate to have Andy. But I also think that science is still at the foothills in terms of real understanding about autoimmune diseases. What is happening to the Vagus Nerve Stimulator or Stem Cell therapies I wonder? Why isn't LDN discussed more on the mainstream medical programmes or the news?

    I know that I'm currently in a very DIY situation with my own health and I really feel so mad with both sides of the debate for the stances they take and their motivations. One person's cure can be another's death sentence so no one should be promoting a diet, drug or lifestyle for others. It's just irresponsible and potentially dangerous.

    This is why I'm particular alarmed by the Betrayal series, from the title to the apparently flaky content. And the more rare and serious the disease is the more some of the HU discussion about this series troubles me. People on these communities are very vulnerable and if a programme maker says awful things about immunesuppresants without hard scientific evidence to support their case, then we may be tempted to stop taking the drugs. No one takes them lightly to begin with!

    So I am grateful to you for keeping discussion going about these issues too because it provides the charity admins and others with the opportunity to express counter arguments.

  • Tried failed many drugs. I'm interested in diet & self care

  • Hi Y'all. Sorry I have not reported on the meeting. I provided notes on the meeting with NRAS but they have not responded to agree or disagree with them. So without that I do not feel comfortable providing a one-sided view.

    I will instead provide a brief report. I met with Ailsa Bosworth and Clare Jacklin and we talked about diet for around 90 minutes. I obviously advocated that diet for anyone with arthritis was at least worth exploring, and anyone with arthritis should as a matter of principle improve their diet as a strategic goal - whether or not they ever get remission from RA. I also added that drugs were an important if not critical tool in fighting RA. However my perspective was that drugs should be used to halt bone damage, to get the disease under control, but for those seriously interested in addressing RA then there were opportunities to do just that. I finished that NRAS should share that goal since any person who could gain remission without any need for drugs should be a worth aim of any charity fighting the cause of people with RA.

    Ailsa responded arguing that she had removed meat from her diet for two years, with no benefit. That for NRAS could not promote specific diets unless argued by the NICE guidelines on RA. That NRAS had had other diet advocates come and talk to them in the past.

    So essentially we hit stalemate, in that NRAS did not, at the meeting, change their position and their advice on diet. That to me does a disservice to the people they serve. So I shall not give up. Instead I will make a further appointment when I am in remission and clear of drugs. That day is coming closer.

    Today I had my latest blood test results. Let me talk yo through my CRP levels. 40+ years of RA. For the history I have available (since 2010-ish) my CRP was generally below 5 mg/L, which implies a normal reading and no RA. In May 2015 my CRP started to climb. By Jan/Feb 2016it had reached a peak of 174. That was an exceedingly painful and inflammatory time, and by all accounts from other people that I have read, as bad as it gets. At that time I almost lost the will to live. I started the paddison program in March 2016 and coincidentally started MTX at roughly the same time. Since then my CRP has dropped and dropped and dropped.

    A month ago my CRP reading was about 24 I think. Today I have a reading of 9. Next month I fully expect a reading of less than 5, otherwise known as no RA.

    I still take the MTX at 12.5mg. But when I am, as defined by CRP, in remission then I will begin the process of removing MTX.

    And so for people who say diet is no solution for RA, I say prove it!

    Yes, you can give up foods and not get remission. Yes you can get remission by chance or taking vinegar or any number of ways. But when it comes to success rate for getting people to a state of remission via diet, the paddison program rocks.

    With a person who is determined and focused it gets them there easily and safely. It advocates the use of medication intelligently rather than blindly. It does not guarantee complete removal of drugs or remission, but provides an easy-to-follow roadmap where success depends on determination and focus of the individual. And that focus includes taking comments such as "diet never works" on the chin, but never in the mouth because what you put therein is totally critical to your good health.

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