Just a thought

[sallyloade]

What if every member on here. wrote to the daily mail with their story. they are always asking for folk to do this.

this might highlight the problems that folk are facing. especially if everyone did it.

I am really horrified when I see what a battle most folk have with their doctors and the arrogant treatment they get from doctors.

I have had injections stopped because of doctors who ain,t got a clue.

the NH's would give an obese person a £10 000 gastric band..

yet they wont help me with a 55p injection to save my life.

Please could everybody send in their story.. bring it to everybodies attention.

Sally

[LtAngua52]

Hi sallyloade,

I've often thought this as well. I don't think I would mind doing it but some might. Especially if they are self medicating and worry that there GP will find out and cause problems.

Martyn Hooper is working with many people on our behalf to change things. He has survey results from many sufferers of PA and b12 deficiency. If he is still struggling to effect change I'm not sure that stories sent directly to them will make much difference.

I tend to think that we need some highly visible respected celebrity who has b12 deficiency or PA would have more weight! Sad but true.

[sallyloade in reply to LtAngua52]

The doctors are the biggest problem. I don't care what they think. I just want to live

[LtAngua52 in reply to sallyloade]

Me too.

[Jay-46 in reply to LtAngua52]

Hi Sallyloade I quite agree with you we should rattle as many cages as we can. I have written to my MP about this and Hunt the health minister it was about two months ago I also gave them lincs to look at this problem, so far I have had no response. I believe if we rattle enough cages we will be heard. I will write this down and show it to my doctor and advise everyone to do the same....

" All truths are easy to understand once they are discovered; the point is to discover them —Galileo Galilei (1564 to 1642), Italian physicist, astronomer, and philosopher" It might be worth asking them what they understand about how the B12 is in the human body and how it gets there and what drugs interfere with its production see if they can answer that.

As for being afraid or scared of doctors for self medicating what about the ones who shove illegal drugs into their veins everyday or drink, smoke, eat themselves to illness are they persecuted for doing this? What you are trying to do is get help for your condition is this a crime? Don't be afraid, no one ever was who wanted change, as Gandhi said 'If you want change in this world you must be the change' Be strong and convicted if you believe this is right and its working for show them! At the end of the day they are not Gods or miracle workers and it is your body. Sorry for the rant. I hope this helps you. Warmest wishes stay well and strong.

[sallyloade]

I'm sure if they received hundreds of letters they would take note

[pugdogs10]

I think that Martin Hooper always gives a very balanced view of things and puts a lot of thought into what he writes. Some of us are not as good at this (self included)... the Daily Mail is not the most well balanced media forum either.

[fbirder in reply to pugdogs10]

he Daily Mail is not the most well balanced media forum either.

Indeed, why bother reading 500 letters when they can just make up the stories themselves. Unfortunately, the Daily Mail Oncological Ontology Project no longer exists. It was a detailed list of all the things that the Daily Mule claimed causes cancer, and another, equally detailed, list of things that it claimed could cure cancer. You probably won't be surprised to hear that many items appeared on both lists.

kill-or-cure.herokuapp.com/...

[Foggyme Administrator in reply to pugdogs10]

I agree Pugdogs. Talking to a newspaper does not guarantee that they will print what you want them to print! It could become a spectacular backfire! Plus, they only have to find a couple of high profile suffer's who have had good treatment and bang goes our case!

What about talking to Martyn about ideas for a campaign / silent march in London to hand in a petition signed by PAS members. Or some such 'thingy'.

Agree with all...it would be really good to do something...thinking caps on people!

[scorpiojo in reply to pugdogs10]

we could all state we wouldn't mind being a statistic for him... As in; I'm willing to give name etc to back his numbers up...

[jillc39]

I think I feel like sallyloade and want to DO something. I hate all this hiding around and being wary of gp's.

[scorpiojo in reply to jillc39]

To me it's very simple.. Diabetics get insulin as they need it... Clearly t3 is our insulin... It's between us and death in some cases.. I'm angry that folk including myself have to act like drug addicts getting stuff where we can and having to inject ourselves... It's wrong and immoral xxx

[Jay-46 in reply to jillc39]

Hi Jillc39 ...please don't hide if we continue to hide they will never know the truth of its benefits will they?...they need to be shown.... do the drug addicts, the obese , the smokers, the drinkers, the body builders with steroids do they hide? nope....The difference is this ... You are desperate to get well and let them know it! Has anyone ever been prosecuted for injecting B12 ? Its your body. Warmest wishes be strong. x

[Lily73]

As far as I am aware, Martyn's story about his b12 diagnosis journey and eventual treatment has already been featured in the Daily Mail.

[deniseinmilden]

It's a great idea to do more in any way to highlight the problems we encounter.

The BBC is going to be covering the B12 deficiency conference in Loughborough in June.

b12deficiency.info/conferen...

I'm hoping to go.

I've written an article for a past boss in the Daily Mail and found nothing positive (or negative!) came out of it. If you really wanted to approach a newspaper The Times and Telegraph are more likely to be of use but it is all likely to be forgotten in a few minutes.

I have worked with TV and believe this offers better impact.

I'm always struggling to keep my body/life running so haven't had a chance to do anything yet but I do think about it a lot and have some contacts.

[Foggyme Administrator in reply to deniseinmilden]

Hi Deniseinmilden. Like the idea of contacts...food for thought?!

I'm hoping to go to the conference also. Should be excellent.

[clivealive Forum Support]

sallyloade only this week I sent "My P.A. Story" to the Guardian but sadly it was too late to be included in the article they were running - you can read it by clicking on my name.

Do you have an email address for the Daily Mail?

As for having celebrities "on board" Dr Chris Steele (ITVs Doctor) is supposedly our new ambassador who wrote the foreword to Martyn Hooper's latest book "What you need to know about Pernicious Anaemia and B12 Deficiency". Hopefully Dr Steele will have some influence.

Perhaps Martyn Hooper will be able to have chat to Her Majesty when he attends the forthcoming Queen's Garden Party - now there's a celebrity to get on board.

I've had P.A. for over 45 years and I'm still "clivealive" coming up to 75 in June.

[LtAngua52 in reply to clivealive]

I think Dr Michael Mosley would be a good choice.

[MariLiz in reply to LtAngua52]

I like that idea, he's covered quite a few illnesses/treatments in his programs. Wonder how we'd get him involved?

[LtAngua52 in reply to MariLiz]

Maybe someone senior in the PAS could write to him care of his publisher? Perhaps Martyn Hooper?

[Twench]

It's a nice idea but I fear the days of the newspaper campaign and the crusading journalist are over.

Martyn Hooper astutely makes the point that doctors listen to doctors so this is where campaigning effort needs to be directed. Right now the doctors that are with us are being drowned out by those who cling to the outdated tosh they learned in med school or who are more concerned about the practice nurse giving us our injections rather then nagging us about drinking too much.

Cost is an interesting one - B12 is cheap but injecting takes up nurse time and I am pretty sure there there are plenty of dubious activities that earn the practice more money.

What I would really like to see is that law changed so B12 injections become available from the pharmacist without a prescription, either to be injected by a trained person in the pharmacy or self-administered at home.

[Marz in reply to Twench]

Such a perfect solution ! On more than one occasion when I have been away from home - I have popped into a Pharmacy clutching my B12 phial and syringe - where I am promptly taken behind the scenes for the injection. I live in Crete - and have had some wonderful experiences - the last one being in Heraklion whilst we were away and as Easter was approaching I came away with small chocolate eggs 3 phials of Hydroxocobalamin and 3 syringes cost less than 5 euro - so what is the problem in the UK. It makes me so sad ....

We can only assume that other motives are at foot ....

[Twench in reply to Marz]

It's tempting to see this as a conspiracy but stupidity is just as likely.

[sallyloade in reply to Twench]

It feels like a conspiracy to me. Who will be next diabetics?

[Twench in reply to sallyloade]

Insulin-dependant diabetics will be fine! They fall ill and die too quickly for their demise to be attributed to anything else.

If you read Sally Pacholok and Martin Hooper's books it's not difficult to work out that the current poor standard of diagnosis and treatment of B12 deficient patients can be attributed to a unfortunate confluence of scientific, historical and sociological influences.

[Hidden]

I am a bit new to this particular area, but I have been trying to work out where the problem lies. There are guidelines, but GPs are either too busy or don't want to update themselves. There is also the issue of different levels regarded as 'normal' by labs, and the tendency of GPs to take that as gospel.

I am a member of the Royal Colleges of GPs patient group and am trying to work out how to raise the issue in terms of how to change things.

The RCGP has an Annual GPs conference every year in October. All arranged for this year, but there are loads of sessions on different issues. Might be possible for a future year.

[Twench in reply to Hidden]

An interesting route. Keep us updated.

[sallyloade in reply to Hidden]

I think the problem is the gps don't follow the guidelines. After a PA diagnoses I was told injections for life as per guidelines. Then 22 years later I had injections stopped. Nowhere in the guidelines does it say do this. Well I can't find anything that says this. Would like to hear if anyone else has