When rich charities deliberately back the wrong horse, something fishy must be going on….

Do you donate to the Alzheimer’s society?

Has B12 and folate helped your declining memory like it did mine?

Not all of us have these particular symptoms. Those of us who do and have B12 injections and correct folate supplementation regularly enough to help repair the nerves of brain, are proof of the fact that our cognitive decline has halted with this inexpensive treatment.

We as patients are largely ignored on this issue, and so are the scientists who report the same.

Read what Jerome Burne has to say on this issue ;

http://healthinsightuk.org/2015/08/06/policy-on-alzheimers-sure-we-want-a-cure-just-so-long-as-its-not-cheap/

‘Do you believe there is a new drug for Alzheimer’s just over the horizon? That there is no truth in the popular idea that B vitamins might cut your risk of getting this dreadful disease?

Well you are wrong on both counts but it’s not your fault, you’ve quite reasonably fallen for some very sophisticated marketing. Let me explain.

You will be amazed at how tiny the benefit a drug needs to have to be hailed as a breakthrough and how ruthlessly a smokescreen of shoddy trials can be used to obscure the truth about the potential benefits of B vitamins.

This is not biased ignorant pharma bashing; it’s a reasonable conclusion from what has been happening. For instance, compare the enthusiastic way a new drug is greeted, with the low key response to research showing that cheap vitamins might do the job.’

….and what Margaret McCartney has to say; http://www.bmj.com/content/351/bmj.h4064

This is no breakthrough. How did this paper score such extraordinary publicity?’

If you want to learn the truth about B12 deficiency please consider joining us at the conference; http://www.b12deficiency.info/conference-2016/

A couple of research papers for you too;

Cognitive impairment and vitamin B12: a review.
http://www.ncbi.nlm.nih.gov/pubmed/22221769

Relationship of cognitive function with B vitamin status, homocysteine, and tissue factor pathway inhibitor in cognitively impaired elderly: a cross-sectional survey.
http://www.ncbi.nlm.nih.gov/pubmed/23042212

 

Best wishes

Tracey

A very bright light at the end of a very long tunnel – Letter 7

The letters page http://www.b12deficiency.info/letters/ is full of examples of poor understanding of B12 deficiency…. but letter 7 is very different!!

If you are struggling to gain access to correct treatment and you have similar problems to this patient, maybe your GP or haematologist could benefit from reading this, frankly, amazingly supportive letter?

‘…….a treated case of pernicious anaemia and subacute combined degeneration of the cord. She requires high doses of hydroxocobalamin to maintain her general well being, i.e. 1mg intramuscularly daily.… I will leave it to yourself to make enquiries and discuss whether her hydroxocobalamin can be fully funded by the NHS.’

 

Many of us have problems with accessing correct treatment. Many of us try desperately to raise awareness of B12 deficiency.

If you want to learn more and know of others who do too, please share the conference information with them – http://www.b12deficiency.info/conference-2016/

Letter 7 Haem-letter-1200

Please note; This letter came to me fully redacted so I have no idea who wrote this letter or which NHS Trust they work for.

Best wishes

Tracey

B12deficiency.info 2016 Conference 17th and 18th June – Education for all, B12, methylation and thyroid.

I am delighted to announce our second event and Sally Pacholok will be with us again!

email-banner

The conference will attempt to address the gaps in the diagnosing and understanding of these conditions and the effects on both physical and mental health.

Please note: This is NOT a two day conference, an identical programme will run each day.

Ticket price £62.00
Includes: Presentations, lunch, refreshments, attendance certificate for CPD and free on site parking.


This conference is for all with an interest in the subjects both personally and professionally.

If you are a patient you will learn more about your condition. If you work with people in any field of mental or physical health then this conference will provide high clinical relevance and an attendance certificate for CPD.

It has been arranged by Tracey Witty of www.b12deficiency.info to promote greater awareness and understanding of B12 deficiency, methylation and thyroid disease.

PLEASE NOTE: There is no sponsorship from, nor affiliations to pharmaceutical or vitamin companies at this event (or throughout www.b12deficiency.info).

The speakers are highly knowledgeable, experienced and engaging. They will discuss the multi-systemic and polyglandular nature of the conditions, diagnosis and misdiagnosis.

Q&A time with the speakers is scheduled.

In addition to our speakers we will hear from three patients who will present their own case studies.

Last years attendees said; – Thanks for organising the excellent conference, the speakers were all very engaging and enthusiastic. I don’t think I have ever been at a conference that so many people stayed until the end, especially on a Saturday!

– I am an acupuncturist and during the conference I realised that my training in B12 deficiency was woefully inadequate. Knowing so much more about B12 and methylation has completely changed my practice!

Meet the Speakers

Sally Pacholok RN BSN
Presentation on –
The effect of B12 deficiency on all body systems. Symptoms, causes, those at risk and common misdiagnoses.

Sally was a licensed Advanced Emergency Medical Technician and worked as a paramedic prior to and during nursing school.

In 1985 aged 22, Sally diagnosed herself with vitamin B12 deficiency, after her doctors had failed to identify her condition. Over the past two decades, she has frequently found untreated B12 deficiency in the patients she cares for and has campaigned to raise awareness of this all too common debilitating neurological condition.

During her presentation Sally will be using case studies to show how b12 deficiency affects people of all ages, including babies and children. She will also be reviewing the pathophysiology, signs, symptoms, risk factors, causes, diagnosis, differential diagnosis and treatment.

Sally’s book inspired Emmy winning film producer Elissa Leonard to produce a documentary on misdiagnosed B12 deficiency in 2011 click to watch. Elissa then went on to produce a feature film based on Sally’s life click to watch.

Anne Pemberton
Functional Medicine Practitioner MSc, PGCE (Autism), RGN.
Presentation on –
Genetic Polymorphisms in Chronic fatigue and Autism: Supporting the role of B12 and Folate and their connection to HPU (Kryptopyrroles).
Anne spent the first 25 years of her working life as a registered nurse in cardiac intensive care. Her son’s diagnosis of autism and the lack of medical help was the catalyst for Anne’s decision to retrain as a functional medicine practitioner.

Anne is now the Course Director on the MSc in Nutritional Therapy at the Northern College of Acupuncture in York. She also runs a busy international clinic, with special interest in CFS (chronic fatigue syndrome) and autism.

Anne uses nutrigenomics data from 23andme.com alongside appropriate functional testing, in order to establish each person’s individual health requirements. She has co-written the first UK based practitioner nutrigenomics course in the UK which is delivered twice yearly in York and London. Anne has also co-authored a book with Dr Damien Downing ‘The vitamin Cure for Digestive Disease’.

Dr. Afshan Ahmad BSc, PhD.
Presentation on –
The effect of thyroid replacement in patients with ‘normal’ thyroid chemistry and clinical signs and symptoms of hypothyroidism.

Development for Vaccine Research Trust, a charity established in 1982 which supports research into why a group of people present with signs and symptoms of hypothyroidism but continue to have blood tests within the reference range. She co-founded Vaccine Research International Plc and helped Dr Gordon Skinner in his thyroid clinic in Birmingham, working closely with him in his dealings with the GMC. In 2000, they published a paper on the effect of thyroid replacement in patients with ‘normal’ thyroid chemistry and clinical signs and symptoms of hypothyroidism.

Afshan qualified with a BSc degree in Immunology and Microbiology from London University in 1983 and joined Dr Gordon Skinner’s vaccine research group at the Medical School, University of Birmingham in 1985, she completed her PhD in Medical Microbiology in 1999.

Dr Joanne Younge
Associate Specialist Old Age Psychiatrist.
Presentation on –
Audit on B12 and folate deficiency in the elderly.

Joanne graduated from Queen’s University, Belfast, in 1996 and is an Associate Specialist Old Age Psychiatrist in an NHS Trust.

Joanne is a Cognitive Behaviour Therapy (CBT) Clinical Lecturer at Queen’s University in Northern Ireland. Her main interest is improving care for patients, either through quality improvement initiatives, using Institute for Healthcare Improvement methodology, or audit.

She co-authored ‘CBT for mild to moderate depression and anxiety’ in 2014 and an audit on improving patient safety, ‘The impact of introducing a Lithium care pathway’, was published as an example of shared learning on the National Institute of Health and Care Excellence (NICE) website in 2015.

The introduction of an electronic care record, with better access to blood results, and improved insight into the potential impact of deficiencies prompted an audit into B12 and folate deficiency in the elderly patients referred to the local service. She is hopeful that the audit, presented at the conference, will have an impact on improving patient care in the future.

_______________________________________________________

To book your place click here

To read more please visit the conference page.

I look forward to seeing you there!

Best wishes, Tracey

If you have CFS or M.E. you may be enraged if your B12 levels haven’t been tested ….

I have blogged about this before but it is worth revisiting because it is so shocking.

First of all please note, that if you have CFS or M.E., then your symptoms are also shared by B12 deficient patients. B12 deficiency symptoms can be reversed with B12 injections.

Secondly, the reason you may never have been tested for B12 deficiency may be because your doctor does not understand that macrocytosis/macrocytic anaemia (large red blood cells) is NOT ALWAYS PRESENT in B12 deficiency. In fact it can be very late stage when damage has already been done. This obsession with marcrocytosis is the focus of these harmful instructions to doctors.

The following screen shots are of NICE Guidelines – ‘Do not do recommendations’ for CFS/M.E.  It is a really tricky page to find (and has a habit of hiding) so here is the link;

https://www.nice.org.uk/donotdo/tests-for-vitamin-b12-deficiency-should-not-be-carried-out-unless-a-full-blood-count-and-mean-cell-volume-show-a-macrocytosis

For those who don’t know :-
NICE’s role is to improve outcomes for people using the NHS and other public health and social care services. We do this by:

  • Producing evidence based guidance and advice for health, public health and social care practitioners.

Taken from; https://www.nice.org.uk/about/what-we-do

There are other bullet point’s on this page but here they state ‘evidence based guidance ‘. I’d like to know what evidence backs up this particular set of DO NOT DO RECOMMENDATIONS for CFS and M.E. patients. I bet you would too.

There are many scenarios on this list which may be of interest to you but I am concentrating on the four which are connected to B12 deficiency. The date of all these recommendations is August 2007.

The first reads – Test for vitamin be 12 deficiency should not be carried out unless a full blood count and mean cell volume show a macrocytosis.


Screen Shot 2015-10-14 at 10.06.47

The second; Tests for folate levels should not be carried out unless a full blood count and mean cell volume show and macrocytosis.

Screen Shot 2015-10-14 at 09.59.49

No 3;  Tests for ferritin in adults should not be carried out unless a full blood count and other haematological indices suggest iron deficiency.

Screen Shot 2015-10-14 at 09.59.36

And finally; There is insufficient evidence for the use of supplements such as vitamin B12, vitamin C, coenzyme Q10, magnesium NADH (nicotinamide adenine dinucleotide) or multivitamins and minerals for people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), and therefore they should not be prescribed for treating the symptoms of the condition. However, some people with CFS/ME  have reported finding this helpful as part of a self management strategy for their symptoms.

Screen Shot 2015-10-14 at 09.59.22

Sinister?

Many clinicians incorrectly believe that B12 deficiency always goes hand in hand with anaemia. This ignorance is reinforced by NICE Guidelines despite the wealth of journals stating the opposite.

You will see that all the symptoms of CFS and ME are also those of B12 deficiency http://www.b12deficiency.info/signs-and-symptoms/

This misunderstanding causes patients harm. Many patient’s never present with or experience macrocytosis (large red blood cells).

It may be a very late sign in B12 deficiency and the MCV can appear normal in a patient taking high doses of folic acid. How many B12 deficient pregnant women remain undiagnosed?

See here from the NHS;

http://www.nhs.uk/conditions/anaemia-vitamin-b12-and-folate-deficiency/pages/introduction.aspx
‘Some of these problems can also occur if you have a deficiency in vitamin B12 or folate, but do not have anaemia.’

 There are many journals on this;

2012. Misdiagnosed vitamin B12 deficiency a challenge to be confronted by use of modern screening markers
(….”but its absence does not rule out B12 deficiency and it is not a specific marker as using it solely would miss 84 percent cases. Its normal range is 80-96 fl.20 MCV can be within normal range despite B12 deficiency specially with concomitant iron deficiency,….)
http://www.jpma.org.pk/full_article_text.php?article_id=3808

1995. Neurological complications of acquired cobalamin deficiency: clinical aspects.(“Pharmacological doses of folic acid reverse the haematological abnormalities (eg a MCV) of Cbl deficiency. This may allow neuropathy to develop or progress and make recognition of deficiency more difficult. “)
http://www.ncbi.nlm.nih.gov/pubmed/8534966?dopt=Abstract

To read more of these journals – or, perhaps we could call them EVIDENCE, please click to see the information compiled by @B12unme
http://www.twitlonger.com/show/n_1s0ae7m

If you have been diagnosed with fibromyalgia too, you may be very interested in this study which uses B12 and folate as treatment; ‘Dose-response relationship and long-lasting effects of B12/folic acid support a true positive response in the studied group of patients with ME/fibromyalgia.’
http://www.plosone.org/article/fetchObject.action?uri=info%3Adoi%2F10.1371%2Fjournal.pone.0124648&representation=PDF

If you have never been tested and suspect a B12 deficiency please see; http://www.b12deficiency.info/what-to-do-next/

Raising awareness; http://www.b12deficiency.info/how-you-can-help/

Please consider signing and sharing this petition https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter?

Best wishes

Tracey

Many B12 deficient patients would prefer ‘a dogs life’ when it comes to treatment

dooby-b12-text-version

Vets have a greater knowledge of B12 deficiency than the average GP.

Jasper wouldn’t be misdiagnosed with fibromyalgia, CFS, MS, or bipolar (etc), in place of B12 deficiency.

He would not be given antidepressants for B12 deficiency induced depression.

He wouldn’t be considered to be a lazy hypochondriac.

He would have all of his symptoms taken into account and his improvement would be monitored.

He would not have to cry and plead for his B12 injections, or involve his MP. Shouldn’t humans be treated with the same level of respect and care?

I continue to work hard on the petition and I need some help please;-If you have written to your MP about your deficiency or the OTC petition https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter?

please could you let me know their name in order that we can get all our MP’s to work together.

My MP has promised to help all she can, but there is strength in numbers so please get in touch.

For more info/research see below;-http://vetmed.tamu.edu/gilab/research/cobalamin-informationhttp://www.ncbi.nlm.nih.gov/pubmed/23535754/
J Am Anim Hosp Assoc. 2013 May-Jun;49(3):197-203. doi: 10.5326/JAAHA-MS-5867. Epub 2013 Mar 27. Clinical and laboratory findings in border collies with presumed hereditary juvenile cobalamin deficiency.
Lutz S1, Sewell AC, Reusch CE, Kook PH.http://www.ncbi.nlm.nih.gov/pubmed/1848001
Pediatr Res. 1991 Jan;29(1):24-31.
Inherited selective intestinal cobalamin malabsorption and cobalamin deficiency in dogs.
Fyfe JC1, Giger U, Hall CA, Jezyk PF, Klumpp SA, Levine JS, Patterson DF.Reply to my email request for information;-

Dear Tracey,

Thank you for your email question. As you know our understanding of the role of vitamin B12 in dogs is far from complete, but there are several clinical diseases in which we know deficiency may occur. During our undergraduate Course, students will be taught about vitamin B12 in several modules eg nutrition and gastroenterology, as well as on clinical rotations when they see cases in practice.

If deficiency is present recommendations for dose rates vary but usually weekly injections are given for several weeks.

I hope this is helpful

BVetMed CertVR CertSAO FRCVS
Associate Professor in Small Animal Clinical Practice

Best wishes, Tracey