As many of you here know, I am a registered nutritionist (BSc, MSc) – for over ten years I have kept up to date reading the scientific literature daily, attending conferences, taking expensive courses and making sure that I am fully aware of what is going on in the scientific nutrition community.
For the last 6 months I have read over 300 papers and written a 57 page review paper on the evidence for diet and lifestyle changes to help lupus sufferers. I have not been paid in this time, passion has been my drive and I have lived off my hard-earned savings. I wanted to do this because I am passionate about helping other sufferers with evidence-based help.
I have never said I could ‘cure’ lupus. What I have said is that diet and lifestyle play a role. They play an important role because they represent a chance for the sufferer to take some positive action that may provide great help. For me it is empowering to know that I can take responsibility for a portion of my condition and work toward making that one area as strong as possible. On a personal level I have managed to put my lupus in remission and I don’t believe that I am an anomaly....by any stretch of the imagination.
Today I feel like giving up with my quest. I have approached numerous doctors in the field of lupus to be told (by someone today) that “As far as I am aware, there is no evidence regarding nutritional additives, foods etc that will help lupus patients, over and above eating an appropriately balanced diet”.......this is an actual response I received.....I received this after sending 57 pages of evidence to this individual. How much evidence is required. Is our healthcare system so driven by the pharmaceutical giants?! Is it really. How tragic. How very, very disheartening for me.
Lupus sufferers say that their doctors tell them that dietary change won’t make a difference and since I am no-one in comparison to a doctor I am not listened to. This is such a blow to me, to my self-esteem, to my passion.
Yes, I am angry, I am sad and I have no idea what I can do as a lone individual flying a flag that is unseen by so many
I’d like to add that the Cambridgeshire Lupus UK group have been very supportive of my work. I am filled with gratitude for that. Unfortunately I think I will have to stop putting hours worth of effort in every day because it is blindingly obvious that I cannot continue to live without making an income. So it is back to the drawing board for me.
Thank you to everyone who has been interested in my work. I simply cannot continue to produce the writing I have been producing without earning an income from it.
Best regards
Ani
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Ani-
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Firstly I want to thank you for sharing your knowledge with us all.
You are passionate about your work and you must not stop. I understand the need for you to work and earn a living, but why dont you gather all your work together and make an e-book or try to get it published.
You must not just let it go as you have put so much in to it.
Totally feel for you! This is so sad! The institutional lazy side of health systems' default reactions can be so defestest.b When I do encounter more enlightened specialists, which I have more often in recent years, I feel almost pathetically grateful and amazed. Yes, can totally understand that paid employment has got to be your priority. And seems to me Margaret's epublishing idea is something to bear in mind: I too feel certain many of us would buy your writing in nutrition & lupus!!
For what it's worth: I've been interested in nutrition since reading adelle Davis when i was a teen in the '70s, and more recently have been trying to follow an antiinflammation diet for 10 years with the encouragement of my NHS pain specialist who is positive this helps us. There has never been a time when I haven't noticed positive benefit from eating well and taking supplements...But I change what I'm doing if I don't actually feel & see tangible benefits: there is no point doing things on blind faith! And for sure the results I've been getting are positive. But, I do take whatever prescription meds my drs tell me to, and only query continuing when I feel I have an informed enough position to ask about cutting down or coming off. It's about balance, for me anyway.
Ani, you beautifully communicate the information so many of us have been searching for. I very much hope you can keep your spirits up while you find the income you need, and that you will discover a way to share what you can with us when time and energy permit. Courage
This is common response for the medical profession. They are so obsessed with evidence base that has nice guidance that they cannot see past their nose. The NHS is so biased to quantitative and never seem to take qualitative evidence. Unfortunately we live in a medical arena where the drug companies have all the power and unless there is drug in it the doctors don't seem to care. there have been studies, all too few, that show diet, lifestyle, and complimentary medicine do work. There have been break through s in the cancer field and a few others. The UCL hospital actual employ complimentary therapist such as Reiki healers to help patients in oncology unit. One way of hitting the doctors is to try to see the practice manager and help them to see that adopting a life style change could save a fortune on their prescribing budget. PLEASE dont give up your are doing a great job. A big hug to you
Anji...so sorry to hear that. I can understand how disheartened you feel. Some doctors are pretty narrow minded. My first one refused to see me anymore because I didn't want to take the pills he tossed at me during after my diagnosis. After all where would they be if we all got better!
I really believe in the diet and Lupus thing too because I feel so much better for changing mine. I and many others really appreciate what you have been doing and I have been meaning to write to say how useful your article in the Lupus newsletter was. I hope it works out and as the above comments say, maybe a book or ebook would now be the way to go. Best wishes x
Why do I get the feeling we have not heard the last from you yet? You are doing such great work and it would appear there is potential for more. I've worked with lots of people who get to the point you are, only to find another door opens, so please don't despair.
Unbelievable! I understand that Lupus cannot be cured with diet but when my blood tests were to the point my doctor said I would have to go on immune suppressing tablets I asked if I could be given a chance to try diet change first and he gave me six months provided I had regular checks, I am vegetarian but I cut out a lot of the diary and took 25+ Manuka honey, I have managed to keep the levels down and am absolutely sure that diet can help and being healthier in general is a good thing. Sorry not enough people are listening to you. X
The history of medicine and health care is paved with sound life saving ideas, which have been dismissed or shelved for decades.
And the business of health care is more about business than healthcare.
I am a big fan of Ben Goldacre, and after reading his column and book am not entirely surprised that your efforts have not been well received by the establishment. That said I also think that charlatans like Gillian Mckeith have not done you any favours. There is a multi-million pound industry selling so called supplements which is a grotesque mirror of the pharmaceutical industry.
I have no doubt that what i eat has an effect on how i feel and how well i am today, I eat huge amounts of fruit, I dont drink and I keep my weight down,
It is unfortunate that the huge health-food & supplement industry, which is more about making money than curing illness, should detract from the work and advice given by true dedicated professionals like yourself. Vasculitis and Lupus have many features in common and in some cases it is difficult to differentiate between them. As chairman of Vasculitis UK, I was very interested in and impressed by your article on this Lupus site and I think Pat Fearnside, our newsletter editor, has asked if we could reproduce it in our newsletter.
Have you contacted the programme currently on television - "The Food Hospital"? The message of the programme is much the same as yours, not that foods and diet are an alternative to mainstream medicine, but that an appropriate diet may greatly influence the outcome of treatment.
When I was a student at dental school (almost 50 years ago!) I went to a lecture given by a member of a BMA group that had visited China to see what aspects of traditional Chinese medicine might be of benefit to us in the west. I distinctly remember the slides and film showing a woman having a caesarian and someone else having brain surgery, another having a tooth extracted, using just acupuncture as an anaesthetic. Unttil then acupuncture was unheard of in the west. Acupuncture has not exactly put the anaesthetists out of business, but it has definitely established a place in modern mainstream medicine. So don't give up!
I understand your frustration and disappointment after all the research you have done. You are up against it ie. the mainstream treatments which are from large drug research studies. There is not the money or the will to invest in large scale research looking at alternative treatments/approaches to keeping as healthy as possible.
I enjoyed reading your piece in the Cambridgeshire Newsletter. As a result I had nuts with my porridge this morning! I am about to phone the library to see whether they can get your recommended book by Karlyn Grimes for me. It is very likely that you will influence quite a few people with lupus through your article just as you have influenced me. I am going to take my diet more seriously.
Don't give up or be too downhearted. It is going to take a lot to change the medical profession's attitude but if a lot of your followers have benefits from your suggestions about diet and lifestyle they in turn can educate their doctors.
Have you by any chance written up your findings in a scholarly way which might be accepted in some scientific journals? If not, I think that this would be a good way forward for you.
Good luck
Don't give up Ani! You can publish yourself through Amazon or contact the Food Hospital which is on TV every Tues evening, it also has a web site.
FACT: diet affects your body and health! If it were not so, you could eat 20 chocolate cakes a day and nothing would happen to you!! Lol You could eat arsnic and not be harmed if diet meant nothing!!!!
By no evidence, they mean "no tests funded by drug companies"done!!
The evidence is visible in the people who change their diet and use food as medicine!
Drug companies make billions of pounds, i think they have their own interests at - erhem- heart..
I use food as medicine as much as poss. I love herbs, amino acids, flower remedies, supplements, etc!
I have been GF DF SF NSF for a long time. I take high strength digestive enzymes from USA called Huston Enzymes TriEnza.
Lets face it the NHS and the government are quick to identify foods which are bad for us- fast food, fried food, booze, white bread, confectionery, chocolate. Obsesity and smoking/drinking.
We all know what a healthy diet is and accept that it is good for us- healthy glow on the outside and inside (I follow a sensible healthy eating plan- lots of fruit and veg and home made low fat meals).
Surely it does not take a huge leap of faith to realise that the use of food in a specific way can help with medical conditions.
If food can kill us, surely the power is there, somewhere, to help us.
We need more Research and crusaders like Ani- keep at it girl!
Thats awful but please dont give up i'm sure all of us can support in anyway possible. I know that diet affects me terribly if i eat what i call "rubbish" high fats etc the suffering is just not worth it. i do hope you continue your good work and they listen x x
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feeling breathless
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Feeling relieved!
