I thought long and hard about writing this blog. It’s been in draft form for months, but I finally decided that enough is enough and I want to make it clear, who I am and how I work.
At this point I want to give heartfelt thanks to all of you who show kindness and support for my work. I am so happy to have helped those whose lives have been affected by B12 deficiency over this past decade and I’ve been lucky to have made some life long friends.
Some of what I have experienced over this past ten years is a story of jealousy and unkindness and that takes its toll. However, I’ll carry on trying to educate, to share and work to try and make B12 injections available OTC from pharmacies.
A little bit of history
It was ten years in September since I launched my site, which I wanted to work as an information hub. I wanted it to be a place for the general public and health care professionals to use in order that they found a quick route to the information they needed to fully understand vitamin B12 deficiency.
My passion to do this was borne out of my own experience in trying to help a psychotic loved one with a severe undiagnosed vitamin B12 deficiency. Unfortunately back then, all I was able to do was give doctors disparate links to sites and journals and this approach wasn’t really working well.
Laura, a good friend of mine, suggested I create a website. It would be a destination for all the research and Information I wanted to make easy to find. Pat Kornic put me in touch with Sally Pacholok who kindly agreed to allow me to use her research on my site. I wanted to highlight B12 deficiency and its impact on mental health, children, pregnancy, fertility and the fact that it is commonly misdiagnosed. In mid September 2013 the site was launched. Looking back now I can’t quite believe I did it. I had never wanted to work on a computer, but sharing information and helping others who found themselves in my position became overwhelmingly essential.
My lovely nephew, Ryan, would type up what I had written in long hand and information from Sally’s book “Could it be B12? An Epidemic of Misdiagnosis”. Damian, my lovely husband, designed and built the first of the three sites we have had over this ten years. He also turns my pencil designs into brilliant images and has always supported me in this sometimes, harrowing and exhausting role running www.b12info.com. Without him and his incredible work we simply wouldn’t have a site.
My Training
New visitors to my site may not know that I served a kind of self guided apprenticeship in B12 deficiency. I joined Pat Kornic’s Facebook group in early 2012 and read, researched and learned.
Once I launched the site I worked tirelessly to field the constant email requests for help. I would panic if people waited more than a couple of hours for a response. I would work at weekends and even Christmas day to reply and offer help to anybody who requested it, completely for free.
I was inundated and was often asked for help by nutritionists. On two occasions I was mistakenly sent the emails from the nutritionists I’d advised, thinking they were replying to their patient. They happily gave my freely given advice to their paying client but never credited their source or gave links to my site that would have empowered their patients to do their own research. Naturally I felt that this was shady behaviour and akin to being given one page of a book rather than the volume. That’s not how I work so I was shocked.
Time for change
By early 2019 I was burnt out, completely overwhelmed. I’d had enough of feeling like I was treading water. I was working more hours than a full time job and gaining nothing but stress. I was neglecting my own relationships because I was so scared of not helping genuinely needy people, but I was jaded by those who used me as a free way to do their own jobs better. I felt sick every time an email arrived and I wanted to turn the internet off.
Damian and I used spent our savings funding two conferences and creating apps that we hoped would contribute to the costs of maintaining the site. Unfortunately some felt I should not make any charge for these services and thought I should provide everything for free because it’s about health. Not one of the people complaining worked without getting paid but they felt very strongly that I should. There was little understanding that I have to keep a roof over my head and eat too.
Charging for my work
A lovely man who I’d helped, told me….
You have helped me more than any doctor has and you should be charging for your work.
Actually hearing someone say out loud that my work was valuable and that I had something to offer made me think. I ran this suggestion by Sally Pacholok and Pat Kornic who both whole heartedly agreed that I should be charging for my skills and experience. Six years’ working for nothing was more than long enough.
This was a big thing for me. Very big. Obviously, I had no formal training in this area and yet I knew I was helping highly paid professionals to do their jobs well. I eventually took the plunge and this meant that most of the cheeky, time wasting people dropped away and made space for those who valued my work.
I still occasionally, have people writing to me asking me to do their research and find papers for them as they are doing a Masters in B12 and the odd practitioner who thinks their time is far more important than mine asking: ‘Can I just quickly look’ at their patients massive case history and advise without payment? Obviously I tell them I have plenty of time to do their work too and I’ll also pull in a weekly shop for them, get dinner ready and finish off any ironing they have too…. I use the term ‘brass neck’ in situations like these.
There has been periods of real animosity toward me throughout this past decade. This increased when I started charging for my work. When I say work, I mean one to one consultations, speaking and writing to doctors and consultants for those who choose to work with me. I already had experience in educating and lecturing on B12 deficiency to groups of professionals and students but another wave of animosity came my way when I created my courses. After all, who did I think I was educating on vitamin B12 deficiency…?
My site is set up so that anyone reaching it can help themselves, most visitors do not request my personalised help, they have a loved one to help them navigate the site and use it’s resources and information. Some of you whom I have never worked with asked if I could add a Donate button to the site because they were grateful to find the information held within it. It took many years for me to feel ok about doing this. You’ll notice that I don’t keep any of my work, blogs or letter templates behind a paywall for the very reason that I want those who visit the site to access all of the information for free.
Charity
I am very deliberately not a charity. There are good reasons for this:
Firstly, there were already two existing British charities who were raising awareness of BI2 deficiency and PA back in 2013.
Secondly, I mistakenly thought my site would act as a stand-alone hub of information with no need for any interaction with me. Thirdly, I didn’t want the hassle of the associated bureaucracy. I just wanted to get on with the job of raising awareness and to have the freedom to blog and speak about B12 deficiency without having to run things by a committee.
I maintain that there is absolutely no shame in my not being a charity, but there are plenty of people who would disagree with my statement. For some strange reason, some people feel that a charity asking for funds is absolutely fine, but that it’s abhorrent somehow, to pay someone for a great service who is being very clear about (and delivers) the service they offer.
Plagiarism
Some years ago I was told about a Norwegian doctor who took to using my posters, but passed them off as his own work by removing my Information. I thought that was a bit rude and was helped to tell him so. (Thank you, Gunhild!).
Plagiarism of my site happens repeatedly and it’s an age old problem for many people who share good work. If you care more about helping others than you do about satisfying your own ego, then you know it’s always so much better to reference your source of information and credit others. People really appreciate you doing this!
I am not medically trained
Some people write to me and tell me that I’m not medically trained, as if I didn’t know! Funny that, I make no secret of this fact. Those who are offended about my lack of medical training try to use it as an insult, but I’m not in the least bit insulted by not having followed a career in medicine. In fact in this field of work, I see it as a strength. I was born with kindness and empathy and I have great communication and problem solving skills. These are my tools and I didn’t require medical training for any of them.
I’m good at imparting information and educating in a clear and concise way. My skills also help people to navigate their way through their particular health system, whether that’s in the UK, Europe, the US or much further afield. I have provided support and guidance for people with B12 deficiency across six continents and have a particular propensity for helping in cases of poor mental health and in children’s cases.
Blocking the path to help
There are some incredibly helpful B12 sites, groups and forums out there and I do not include them in the following…
There have been occasions online that I have been alerted to from concerned people who see that others try to defame my character and I’d like to thank you publicly for your kindness!
When people witness how I am treated they may stay silent publicly, but email me privately to express support. They don’t want to ‘out’ themselves and align themselves with me because they may be targeted too. Some just silently ignore the abuse even though I may have helped them personally. I fully understand that it is difficult for some to speak out and that any kind of confrontation for some is terrifying. Anyone who knows me, fully understands that I always stand up for myself and for those I see bullied, or gas lit, or who are in need of support. I can do my job effectively, simply because I don’t succumb to bullying behaviour.
I understand that people are careful about sharing links to my site due to ‘in house’ censorship. Some groups will commonly delete links to my site when shared by a member, not because it isn’t helpful, but simply because it is. Some want to eradicate the competition as they see it. They feel, in their infinite wisdom, that they can do better and they don’t want people to have a choice about who helps them. You may be warned: ‘we don’t trust that site’, ‘she charges for her help’ ‘that’s a misinformation site’. In this situation I would urge you to do your own research, it’s always the best way for you to discern what’s right for you, rather than what’s right for another agenda entirely.
Some ‘support’ groups have rules which ban private messaging between members…..Isn’t that a bit odd? Why would that ever be a group rule? Sounds just like a dictatorship to me. Thankfully some people in need have found my work precisely because a kind soul has gone against this controlling ‘rule’. Quietly sharing my site in a private message because they saw someone they felt they could do with my kind of help. To all those who use this tactic may I extend a huge THANK YOU and congratulations, YOU really care about people and we really appreciate you going above and beyond!
All the above, frankly odd behaviour, appears to be rooted firmly in the land of jealously. Those of us in possession of good emotional intelligence know that jealousy is a harmful emotion, it consumes people who engage in it and colours everything they do. People who behave in this way may have extremely low self esteem. They are bullies and will turn on anyone who doesn’t go along with the lies they spread. Surrounding themselves with likeminded people who appear to be totally unable to think for themselves or who may actually be too afraid to stand up for what is right.
Sharing is caring
If any one tells you that you can’t share good, trusted information, then there’s something seriously wrong. If you have been lead to believe I am not as I seem via my site then you are very welcome to challenge me, I am very approachable.
I don’t do this work to promote myself, I do it because the lack of knowledge of B12 deficiency wreaked havoc on the lives of people I love and I want to help try and stop that happening to anyone else.
Genuinely, I believe there is room for everyone, that we all have something to offer, that people will choose who they want to work with given the choice. The B12 problem is so enormous that there is absolutely no need to compete with and defame people who are trying to make a positive change.
I’m not going to be everyone’s ‘cup of tea’, I appreciate we are all different, what suits me doesn’t suit another. Some will choose to work with me, others won’t. It’s important to find the right fit for you. But kindness is the key and sharing is caring. I share information I think will benefit others even if it originates from a place that derides me. I do this because actions always speak louder than words and nobody needs their path to help and healing being blocked.
Kindness always
Tracey
I’m someone who was helped so much by you and your site and share it as much a possible.
I have had it removed from post from some “health “ groups as yes your information is too much truth !
I’ve tried to donate when I can and would gladly pay more for all the information and help over the years.
I wish doctors and medical professionals would read up and wise up .
Dear Nic, thank you so much for your comment and loveliness! My very best wishes
I do not belong to your group so am not biased, please accept my heartfelt thanks for all those you have helped from this awful condition, many will have had their lives restored, I have Pa, hypo etc. and but for health unlocked another voluntary group I would either have ended up in aloony bin or been dead. You are a treasure, keep going, the medical profession has still to realise just what a nightmare people with this medical condition end up in because of their ignorance.
God bless.
Dear Mary, thank you for your lovely message!❤️
Hi Tracey,
I’ve recently found your blog, and have just finished reading this latest one. We have some shared experience it seems!
A few years ago having had my 2nd child I became ‘poorly’ fatigued, dizzy, pins and needles constantly, brain fogs ….you know the drill! And for 2 years begged for help from the dr. I was offered antidepressants 3 times, told I had rheumatoid arthritis (I didn’t) and eventually with a shrug was told to drink some orange juice and see if that helps. Not once was I given a B12 blood test. So I did my own research and eventually realised I needed B12. I was going back to work so retrained in B12 deficiency, I was already level 3 in various other health and wellness areas, and spent a fortune privately training myself as a non medic B12 technician. In 4 injections I was back! And I had a new business to build and a passion to spread the word on B12 deficiency.
I took a different approach to you but give advice for free, share information on my website, help clients get it from their GP if I feel they can. I also inject people who wouldn’t do it for themselves. Yes I make money! I’m a single mum and have zero worries about this! I have had backlash throughout. I’m not medical, it’s disgusting that I do this… forums have blocked me when I’ve offered my knowledge and realised I have a private clinic (like my information is sullied by this). My FB has been shut down, I was reported as I wasn’t a doctor (never claim to be), I want B12 available OTC there is enough of a problem for all of us to work and all of us should be supporting each other getting the word out. My clinic is full of amazing people who found me and now feel better! I love my job passionately, I’m so grateful to do something that helps others feel better and helps me support my family. So yes! You should be earning and well done for writing such a brilliant post. You definitely have a cheerleader in me. Kelly
Dear Kelly, thank you for your kind words sharing your experience.
Orange juice eh? Wild! I remember a lovely woman telling me that her doctor suggested that all she needed was ‘to find herself a boyfriend’…Beggers belief!
Well done for speaking out about this. You’ve helped me enormously (in all sorts of ways), and I am very grateful.
Thanks for all you do, Tracey xx
Dear Rachel, heartfelt thanks ❤️
Know that you are doing good and very important work. There will always be those who are resentful and envious of your value and worth because they do not feel worth and value in themselves.
Keep on keeping on.
You are very kind Hilary, I will keep on keeping on, thank you! Very best wishes Tracey
Keep up the good work!! Think about the people who have quality of life thanks to your content
Thank you Lyn!
Thank you for the well thought out email Tracey 💜 I am sorry to hear about the way you have been treated. Of course you should charge for your work, you are an expert in this field! I often signpost people to your site. I have lost count of the number of “qualified” people who know very little about B12 deficiency and so many doctors refuse to test for it! Please keep up the good work 🙏
Thank you for your very kind words Indiejan! ❤️
The more help there is out there, the better. The more education and support the medical profession can access when it comes to B12 deficiency, the better treatment we will receive.
This can be an incredibly isolating condition and difficult to get help, particularly initially. A lot to learn, pushing for tests necessary, trying to comprehend the existing barriers while experiencing cognitive and memory issues. Understanding your own limits. Just being able to ask : Is this B12 deficiency or something else ? Why don’t doctors know ? Am I going mad? Is this just me? Will I ever get me back? How ?
Don’t get snowed under, don’t get disheartened. Don’t allow other people to distract you from what you are doing. I’m glad that you have managed to help so many people and continue to use your skills to make their lives better.
Thanks so much for taking the time to comment Cheryl ❤️
I found Tracey 9 years ago, at my wit’s end, being gas-lit by my , as it turned out, dangerously negligent GP ( not just me and not just B12) and Tracey saved my sanity.
Her work creating and hosting paid for seminars is an absolute godsend.
Paid for, not just because this is a full time endeavour, but also because GP’ and other medical professionals value their time, and are more likely to sit up and listen and attend seminars that they have to pay for, perceived value if you will.
I also joined UK PAS, and still work with them to this day, because I have neurological damage because said GP repeatedly lied for years, knowing, having the test results in his hands that clearly showed I was severely deficient, and the neuroligical aspect is often overlooked, the name Pernicious Anemia + uneducated health professionals leads to very dangerous outcomes for patients not suffering from the anemia.
Tracey helped me see the bigger impact of B12 deficiency, helped me stand up for myself as the patient, and gave me the confidence to pass on her website links to anyone I met I felt could use it, including family who initially didn’t understand how I went from fit & healthy to in a wheelchair in tremendous pain, and oh so very weak physically.
Mental health is not just affected by B12 deficiency but also, in large part, by the ignorance and struggle to be heard, and Tracey is out there educating those health professionals who take their duty to their patients seriously, why wouldn’t she charge a fee for that?
People on YouTube charge subscription fees for far less ( in my opinion, perhaps make-up classes are important to some, but surely not actually tackling the education of HCP who without it might inadvertently kill their patient?)
I am not surprised at the backlash but shocked nonetheless that people can be so unnecessarily unkind.
I write this to stand up, and say I know Tracey , not personally, never met in person, but repeatedly through emails, at the beginning panicked emails from me, begging for help, and I am a scientist, a geneticist, and I couldn’t take on my GP surgery as a patient by myself, and Tracey has done nothing but help people, repeatedly over the 9 years I have known her.
She is a highly intelligent, extremely kind and understanding person.
The world needs more people like her, so please support her with the same kindness she shows everyone else.
Fleur your experience stays with me, you are an absolute inspiration. Thank you so much for standing up for me, you very, very kind soul ❤️
I have seen first hand how distressed Tracey has become over getting the message across have worried about how it was affecting her and even urged her to give up but still she fights on. I admire her resilience, patience and caring attitude to all. Tracey has helped so many people world wide including myself but this has taken its toll and still she comes out fighting. Bless you Tracey for caring and thank you on behalf of everyone you have help . Maybe one day you will win through and it will all have been worth it. I’m so proud of you .
Thank you lovely Ann ❤️
I have always loved your sense of humour Tracey and am so glad you are still there despite some of the negative comments you have received. I will always promote your site as honest and truthful based on your own experience and on those of others you have helped. The professional “fence” (or defence) that your work is not always evidence based is futile and meaningless to many people desperately seeking help from the medical profession. Unfortunately their hands are also tied as you well know. But you can take heart from your own success stories and the recovery of all the people you have helped. This to me is all the evidence you need.
Marjorie, you were the first health care professional who listened, cared and made it possible for your colleagues and students to learn about B12 deficiency. You are one in a million, thank you! ❤️
Tracey saved my life! The most empathetic, caring and intelligent soul that I have ever met. I have seen first hand how hard she works…alone selflessly and tirelessly to support anyone. This work can be so distressing when people that she is helping are in crisis but she cannot stop, prioritising those that need help and getting them the treatment that they need. Tracey is a specialist, sensitively navigating a complex field to enable people to be informed, have choices and lead an improved quality of life. Invaluable.
Hayley ❤️ thank you for your lovely comment.
Tracey, reading this has made me feel such sadness for the way you’ve been treated. You are an amazing person, that has done so much, for so many people. Trying to get B12 OTC is such an important fight and I know the weight has been a lot on your shoulders. That’s just one of the things you are doing to help.
I’m disgusted about how some people that could have supported you, have instead just done the opposite. When each group of people stay seperate, but essentially trying to achieve the same thing, it affects us all, we are all in this together, so it makes no sense to be apart. As you say, there’s enough room for everyone, and with more people supporting the same aim collectively, it creates more visibility.
You’ve worked tirelessly to get B12 OTC, which we are all so grateful for. Your site alone is such a great source of help, without factoring in all the other things you do to help us all. Take strength from all of us that love you and are so thankful for what you’ve done to help us. Block out every other noise, be proud of what you’ve done and what you are continuing to do, because I know we all are proud of you! Lots of love, keep being fabulous xx
Thanks so much Amy, Lots of love to you too fabulous one! ❤️
Dear Tracey
I try to share links to you and your work whenever I come across people with b12 deficiency.
I so understand how tiring, draining and stressing it can be trying to help others and constantly worrying about their health outcomes.
There is no excuse for abuse, unkindness or jealousy when we are all in a battle to improve patients lives, raise awareness and try to get the professionals to wake up and get onside.
You do a fabulous job and as one who is self taught on the subject have more knowledge than most GPS put together in the uk. We all have to become our own experts because GP s aren’t. It frightens me that when a medical professional lacks up to date knowledge that impacts a patient that they are not duty bound to go on your courses!!
It should be mandatory that training occurs and it should be funded by the health system. While individual doctors have to pay for their own training they can easily opt out but morally they should be obliged to update themselves.
What if a civil engineer decided to build a bridge with a new material and hadn’t trained to use it properly so it failed? They would be sued for professional negligence.
Your knowledge is fantastic and the fact that you share it is to be be applauded.
We appreciate you and we value you but you must safeguard your own health and well being also. You have a right to charge for your services and you need to make a living so keep on keeping on and don’t be bullied by the jealous and ignorant .
You are an amazing lady.
Dear Sue, thank you for your lovely comment, you are very kind! ❤️
Thank you Tracey for all you do. Yes because people are passionate about their work and people know you can help, people can come in the masses. Leaving the person exhausted and burnt out. I have always loved saying the word NO.
I am medically trained and I came on one of your courses. Because you know more than me. My knowledge of thyroid disease is minimal. Unfortunately, there will be people who pass work off as their own when it is NOT. They are complete and utter plonkers.
Hope you had a relaxing Christmas. ❤️
Dear Charlotte, thank you so much for your kind comment, it made me smile, you are one in a million! ❤️