Please write to your MP

Our MP Grahame Morris in Easington has tabled what is called an Early Day Motion (EDM) on Vitamin B12 deficiency which is wider but includes Pernicious Anaemia/ Pernicious Anemia. 
Grahame Morris MP is a member of the Health Committee and since elected he has taken an interest in drawing attention to our condition, often undiagnosed and therefore not dealt with. 

EDMs are motions which can be signed by MPs to show their support.  In the past they have not been debated but the Speaker has said that this may change especially for those signed by many MPs from all parties.  They are printed and available to MPs and Staff in the House of Commons and make interesting reading on all subjects. 

Information about EDMs is available on line at www.parliament.uk or edmi.parliament.uk so you can see if your MP has signed up.  Ministers and shadow ministers may not feel able to sign as EDMs are for backbenchers primarily but they can write to the Secretary of State and ask him to take up the issue.  So write to your MP, thank them if they have signed and ask them to sign if not. 

We would like to you to write to your own MP asking for their support for and awareness of Vitamin B12 deficiency.  The EDM is no 1299 and named VITAMIN B12 DEFICIENCY

You can make a difference for your lives and the many undiagnosed and therefore untreated people with B12 deficiency.

Make Sure your MP has your contact details: address, phone, email and good luck!

If you need to find out who is your MP, then go to http://www.theyworkforyou.com/ and put in your postcode - it's excellent!

The wording of the Early Day Motion

The rules are that it should be a single sentence and no more than 200 words in length

That this House welcomes the benefits of vitamin B12 therapy; believes that greater emphasis must be placed on recognising and treating B12 deficiency which can be a major cause of ill health and unemployment; recognises that the replacement of the missing nutrient can restore quality of life, enthusiasm and energy to the individual; notes that many of the drugs used to treat misdiagnosis are expensive and can have lasting adverse effects; and calls on the health community to recognise and research vitamin B12 deficiency to ensure the needs and symptom patterns of patients can be treated in a way that is cost-effective, without side-effects and completely safe. 

Please contact your MP and either thank them because they have already signed, or ask them to sign!

Who has signed?  Today (9 Feb 2011) 21 MPs have signed:

WRITE TO YOUR FRIENDS TOO AND ASK THEM TO WRITE TO THEIR MPs

Fear Friend

You asked to receive copies of our Newsletter, and I hope you also enjoyed reading the pages on the B12 Deficiency Patient Support Group web site.

Could you help?

Please write to your MP (Member of the UK Parliament) to get them involved with an Early Day Motion (EDM), which highlights B12 Deficiency and Pernicious Anaemia/ Pernicious Anemia.

You can find your MP (and how to contact them) on http://www.theyworkforyou.com.  If you can't find an address or email then it is usually [firstname].[lastname].mp@parliament.uk.

Ask them to sign the EDM  number 1299 named VITAMIN B12 DEFICIENCY  (the Early Day Motion is described on the web page here: http://b12d.org/content/uk-parliament-early-day-motion-edm-b12-awareness) and tell them why you are concerned with Pernicious anaemia and B12 deficiency.  Write to them and thank them if they have already signed up.  You can find out if they have already signed the EDM at www.parliament.uk or http://edmi.parliament.uk. 

Some MPs, and Ministers and shadow ministers may say they are not able to sign EDMs or they don't think it is worth it.  But the Speaker of this parliament has said that if an EDM has a lot of cross-party support then they may be debated, so EDMs could be very powerful now (unfortunately the last EDM was during the last parliament so it doesn't count).

Please take action.  Help the NHS put its resources where they are most needed, and give people their lives back with the right awareness, the right diagnosis, and treatment tailored to their needs.

Thank-you

Hugo and the Patient Support Group

I want to wish you all happy holidays, and especially Happy Christmas!

I apologise that you haven't been able to find the Search box for the last few weeks - I had no idea why it was gone.

I also apologise that you haven't been able to leave comments or blogs.  That too has been fixed!

Hopefully I'll get the newsletter working soon, too

I thought you would like to know how the visit to Downing St went.

The Easington MP, Grahame Morris (Labour Party), was extremely kind and agreed to meet us in Porcullis House beforehand, so we didn’t have to sit in a dreadful over-priced café or stand in the rain. But it turned into a business meeting – Grahame Morris has been extremely busy furthering the cause for Vitamin B12 awareness, and has enlisted the support of a Conservative MP (Priti Patel, MP for Witham) who met Dr Chandy at the Award Ceremony for the Glory of India Award. The two of them have circulated our summary of the cost-effectiveness of screening for deficiency and treating with Vitamin B12 to the Commons Health Select Committee, and have written a joint letter to the Secretary of State for Health, Andrew Lansley CBE. This is an enormous step forward!

How has this happened? Well, there’s a silver lining to the austerity measures and the parlous state of the country’s finances – we can no longer afford to do things that don’t work, we have to do what actually makes people healthier. If B12 deficiency is the underlying cause of a great many conditions, then treatment with Vitamin B12 replacement therapy will save the nation in medical costs as well as giving people the quality of their life back and helping people back into work. The cost equation is very clear (see http://b12d.org/content/cost-mis-diagnosis) in favour of B12 deficiency screening, appropriate diagnosis and tailored treatment.

DOWNING STREET –

Signs of a Change

As we walked to Downing Street from Portcullis House, two chance meetings convinced us that B12 awareness is finally gaining ground.  

1. we passed Stephen Dorrell MP, Chair of the Commons Health Select Committee, who greeted Grahame Morris MP warmly.  Grahame has been active explaining the benefits to individual people, to communities and to national of Vitamin B12 deficiency so this warm greeting suggests his proposals are supported
2. we met an old friend, Mary Southcott, who has been active in lobbying for recognition for B12 deficiency. This chance meeting was extraordinary - she would normally use a different door and 30 seconds either side and we would have missed each other!

Sadly my own camera and phone gave up so I couldn't photograph Grahame Morris MP with Dr Chandy, or Dr Chandy outside Downing St.  But we have the best photographs!

Shinwell Medical Group in Horden is celebrating 85 years of medical care for people in Horden, Peterlee and the surrounding area. Dr Joseph Chandy came to Horden on 1 November 1970, and is celebrating 40 years at the practice. He is probably the longest serving Principal GP in Co Durham and may be one of the longest serving in UK at the moment.

Dr Chandy arrived in England in 1966 after qualifying in Kerala, India, and after serving as a paediatric specialist and GP in other parts of England he came to Horden to take up post as Principal GP. He was 29 and took over from the much loved Dr Maxwell.

The practice originated in Yoden House, West View and moved to the current site Shinwell Medical Centre on January 1988; the Medical Practice building won the Royal Town Planning award for design.

In March 1988, Dr Joseph Chandy opened the first Nursing Home in Horden and Peterlee. It was one of the first purpose-built Nursing Homes in the country and was a joint recipient of the Royal Town Planning Award. It was the largest single private investment in the village after the coal closure.

The Practice has grown from 2900 to 5700 patients and has a substantial branch in Peterlee Health centre for both doctor appointments and clinics. He is ably assisted by 3 GPs, Muhammed Sharjeel, Oliver Barnsley and our female GP Mala Kalia.

In 2006 Dr Chandy featured in the BBC 1 programme Inside Out on his ground breaking findings in relation to Vitamin B12 deficiency. You can find out more and view the documentary at the Patient Support Group web site www.b12d.org.

On the 25th September this year, Dr Chandy was awarded the Glory of India award on London for his outstanding contribution to his adopted country. Fellow awardees included Priti Patel, MP for Witham, and Baroness Verma.

On 2 November Grahame Morris, MP for Easington congratulated him "it is a magnificent achievement and is a testament to the hard work and care you have given to the community in Horden for 40 years"

To coincide with the celebrations this month, Dr Chandy has been invited to No 10 Downing Street to celebrate Diwali with David Cameron, Prime Minister on Tuesday 16th of this month.

The patients held a celebration for Dr Chandy on Thursday 11th this week where they gave an award of their own to show their appreciation.

True to form Dr Chandy has no plans to retire!

His son, also Joseph is the Business Manager and partner at the practice and is Chair of the local GP Commissioning group, an organisation that represents all practices in East Durham for purchasing services for patients.

This is the start of B12 awareness.

After nearly 30 years of treating patients, trying to raise awareness, and encountering obstacles from those who are supposed to safeguard the nation's health, Gods work through Dr Chandy is finally being recognised.

people have suffered through the ages (although the first recorded diagnoses of pernicious anaemia (PA) and subacute combined degeneration (SACD) were documented in 1824, 1855, 1870, 1900 at the list goes on; we can be certain that this was a problem for many hundreds of years before then), and that has seemed to be no hope. Dr Chandy vision and mission has been to bring hope to these people.

In September of this year (2010), Dr Chandy was honoured by his country of birth to receive the "Glory of India" award for services to his adopted country. This honoured both his 40 years as a GP in a deprived area in England, and his work on B12 deficiency.

This was followed, in November, by an invitation from the Prime Minister of England, David Cameron. Dr Chandy will attend number 10 Downing Street, with other prominent Asians from the political, business, and service arenas, to celebrate the end of Diwali on November 16.

When much is demanded, the rewards will also be great.

Dr Chandy has been a GP in Horden, County Durham, United Kingdom for 40years and during that time has amassed a wealth of experience.

When people came with tiredness and unexplained neurological symptoms, Dr Chandy began to suspect something more and tested these people for the amount of vitamin B12 they had in their bloodstream.

Many many people have now benefited from vitamin B12 replacement therapy for a variety of conditions which you can find out about by exploring this site.

You can also find out about Dr Chandy's work from the BBC Documentary

To contact Dr Chandy, please email dr.chandy@b12d.net

I am, I see, I think and I feel why does no one recognise me.
I want to shout out in the darkness
'Why the loneliness, isolation and a desperate helplessness;
Please someone comfort me'.

Some doctors say it’s all in your head,
That’s it, there's nothing more to be said.

50x3 years ago a doctor found out about someone like me,
What went wrong and how can this be?
Why there are so many people around like me. The facts he found
have gone underground.
No longer is there chapter and verse
There is so very little to be found.
This silent disease slips into our lives;
It knows neither age nor does it discriminate
Only to often it’s found to late.

But what is a rebel without a cause?
It’s me and the revolution.... b12 of course.

by Susan Peacock 

KOCHI: In a BBC One documentary ‘Inside Out’, which can be seen on You Tube, Catherine Iceton of Horden, Britain, had been diagnosed with multiple sclerosis. “I could not see or walk properly,” says the mother of two. “My life had come to a standstill.” Seven years went past.

In August, 2006, she came under the care of the Pala-born Dr Joseph Chandy Kayalackakom, the general physician in the National Health Service (NHS) at Horden. “As soon as I saw her I knew she had a Vitamin B12 deficiency,” he says. A blood test revealed that Catherine had a B12 level of 175 nanogram per litre (ng/l). This was far lower than the normal 500 to 1000 ng/l. Immediately Chandy put her on 1000 mg injections every day. Within a few weeks,  Catherine was able to walk and her eyesight was restored. “The nightmare was over,” she says.

Read more Shevlin Sebastian's page or download PDF of article including photo

The Pernicious Anaemia Society Spring Conference is coming up on 13th March, and it took my mind back to last year's conference.

Dr Chandy spoke to an excited (and in some cases sceptical) audience about how widespread B12 deficiency may be, and the many different ways it manifests.  It was a real eye-opener to the medical community, who up to this point had believed that B12 deficiency was a haematological disease (blood condition) and led to PA, or the other way around, and that was the end of it.

Since then, mountains have been moved!

• Early Day Motion (EDM) which highlights the problems of B12 deficiency has been signed by MPs
• the National Institute for Healthcare Research (NIHR) has proposals on the table for studying B12 deficiency and its association with other, supposedly incurable, diseases
• MPs have attended a "meet the constituents" event to discuss the need to recognise B12 deficiency and treat it more flexibly
• NHS County Durham has relaxed the restrictions on treatment for existing sufferers of B12 deficiency in East Durham, so that they can be treated in line with BNF guidelines
• Axis-Shield has made us aware of a test for Active-B12, or holotranscobalamin, which may prove to be the answer to our problems with total serum B12

Just as a reminder as we prepare Dr Chandy's presentation for this year, I thought it would be useful to post his presentation from last year.  We didn't post it earlier because of its size (it had a number of scanned papers in that have taken some time to convert to text).

PA Society had their annual conference this week, The conference was excellent – like stars in a night sky!  Of course we don’t know everything there is to know about B12 deficiency (the night sky), but the professors and researchers who presented knew an enormous amount about their individual subjects – pinpricks of knowledge that burned very brightly!

For example, there was a professor who knew just about everything there is to know about Crohn’s and IBS.  His assertion was that bacterial overgrowth (bacteria from the large intestine invading the small intestine) causes B12 deficiency because the rapidly growing bacteria steal the B12 from the food before the human can.  He said this was a new discovery but of course Chanarin wrote his definitive work (1960) before all academic papers were put on the internet (and said this in his table of causes of B12 deficiency, calling it Tropical Sprue).  But the talk was lively and included a reference to the Wars of the Roses (one of our Civil Wars).

Another professor talked about B12 used to reduce brain shrinkage and progressive dementia and Alzheimer’s.  They had data from large scale studies in USA, UK and Norway and the results were nothing short of astounding!

Our friend Sid Banka from Manchester talked about the genetic studies he’s doing – his work is fascinating and I suspect there are many more years of work to go.

A pair from Dublin University in Ireland showed us the research on Active B12 blood tests.  I have some minor misgivings, and at present it requires that blood is centrifuged the moment it is taken and GP practices in UK don’t have our own centrifuges, but it may be a big step forwards in the biochemical diagnosis.  We still believe signs and symptoms are more reliable and quicker but we’re going to continue to look into this, with the company that makes the test and probably with these two academics.

Dr Chandy took a different approach, particularly as the lay people in the audience (and many of the academics who hadn’t immersed themselves in each others’ fields of research) had trouble understanding the detailed academic descriptions.  Dr Chandy showed photographs of patients, the types of conditions that in fact had B12 deficiency at their heart.  A sceptic on my table had earlier asked whether B12 deficiency was all in the mind, and I asked him with each photo “could someone get their physical condition into that state through their own mind?” so he was quickly convinced and demanded Dr C’s contact details.

We had a wonderful day.  I don’t know whether the presentations will be available for download.  I’m busy searching for some of the published work from the people who presented.

At the end, the PA Society showed the film “Living with the Fog”. You’ve probably seen the trailer on YouTube

The speaker list was impressive: Sally Pacholok (of "Could it be B12?"), Alfred Austermann ("The Surviving Twin"), Hans Reijnen, Dr Chandy of course, and ably chaired by Paul Heijer, held at a beautiful site in the protected forest area outside Amsterdam.  

The conference was hosted by VitOrtho, who supply nutritional supplements to alternative medicine therapists.  It appears that the continent of Europe freely accepts both mainstream medicine and alternative medicine, since many health care systems are insurance-based with co-payments and many patients prefer to go to alternative practitioners.

How did the conference go?

Sally Pacholok gave two presentations, one an overview of B12 deficiency, and the second on the costs of not treating.

Sally has an enormous amount of knowledge, even more than was in her excellent book Could It Be B12?: An Epidemic of Misdiagnoses.  She recognised the potential language barrier and spoke clearly about the facts of B12 deficiency, including why it is so often mis-diagnosed and why treated inappropriately.  Since the first edition of the book, Sally has reviewed thousands more cases and added to her knowledge, and given numerous interviews and talks; she was able to give a whole second presentation on the cost of misdiagnosis for those clinicians and policy-makers who think of medical care in terms of hard cash.  It would be difficult not to get caught up in her enthusiasm (we were enthusiastic) and the audience found plenty to talk about.  Second edition of her book (extensively updated) available from March 2011.

Dr Chandy's presentation focussed on the difference B12 makes.  We showed that B12 deficiency runs in families, that the problem has been known about for centuries but only recently has it become contentious (people in developed countries can't suffer from nutritional deficiencies - can they?), and just how widespread it is.  We mentioned the signs and symptoms and directed people towards the web calculator.  We didn't touch on the Cost of Misdiagnosis because that is available from the web site.  It's all based on experience, so people were very interested.

Dr Austermann was also excellent - i really enjoyed his explanation and realised that this probably applies to my own daughter.  We're examining his book

Two other speakers were alternative therapists in Holland, and I admit we were concerned.  Dr Chandy and I cannot recommend or even support their methods, nor the theory behind modern-day (since 1796) homeopathy - the theory seems to go that if something causes a symptom, then when you potentialise a solution by removing that substance, it will automatically and even magically cure that symptom.  It sounds an awful lot like the bastardised child of the theory of vaccinations - somewhere in the distant past there was truth, but the present day version has lost the thread and produced something completely different.  B12 is an obvious addition to these forms of therapy, since a great many people feel better, more full of energy, after a dose of B12 regardless of whether they are well or ill.

So - an excellent learning experience, but not necessarily one we'll repeat.

This was the first PA Society Conference we attended, in the fantastic Bryngarw House just outside Bridgend (South Wales).

So many wonderful people, really great company and so wonderful to find that we aren't alone.

The handout from the presentation Dr Chandy gave is here

This year over 100 attendees, compared to around 60 last year.  Martyn you've done an excellent job!

Some excellent speakers and we really enjoyed it.

The first half of Dr Chandy's presentation explains B12.  The second half is a debate when we put the points that the Minister for Health had raised in her letter, and asked the people present (all 100) for comments.  So the response is from all of us, not just a few in an inner circle.  Hopefully that will have some impact.

Dr Chandy's presentation is here

Newcastle Chronicle and Journal announces the launch of the B12d.org web site

An East Durham doctor has launched a website to provide information to thousands of people who are concerned they may be suffering from vitamin B12 deficiency.

B12 deficiency can manifest itself in many ways including extreme fatigue, hair loss, paralysis of the limbs and depression.

After revealing his findings earlier this month, Dr Chandy has been inundated with requests from across the UK and as far afield as Croatia for more information.

http://icnewcastle.icnetwork.co.uk/lifestyle/fitness/tm_headline=fit-and-fruity-fun-day-play%26method=full%26objectid=18125910%26siteid=50081-name_page.html

(about half way down the page)

Dear friends

Thegreatlady888 sent this link to part 1 of a TV programme she has posted.  I'm afraid I don't know any Arabic but I could pick out "Vitamin B12" and the programme itself is very visual and explains the case.  Part 2 to follow:

Please note If the above video says "Video not available" (it does, occasionally) then that means that Embedding has been disabled. Please go straight to YouTube to watch it on http://www.youtube.com/watch?v=fagT_v6sAas