Dear Prime Minister and Deputy, Mr Cameron and Mr Clegg,
With the request to hear views I think it is important that I point out over the next weeks there will be contained in here some good ideas about how to help the feature film sector of which I am a member. One of the idea's from many of the Cannes film festival attendees was the introduction of small 20p levie on evey cinema ticket sold to create a cinema distribution fund in the UK for British Films. More on this over the next few weeks.
In the meantime I want to address the apparant wish of the Prime Minister to ask Charities to in some cases take on the burden of the state. In theory this sounds fine but let me explain the dangers as outlined by the supposed B12 lobby of parliament that took place last November. The original remit of the lobby was to attempt to review the treatment of Pernicious Aneamia in the UK. Sadly the event was hijacked by a group of B12 campaigners who wished to profit financially from B12 deficieny rather than support Pernicious Aneamia, which as an auto immune disease requires a different regime of life long injections of B12 as opposed to a course of B12 tablets for those who just have a vitamin deficiency.
In the case of Penicious Aneamia the patient has no intrinsic factor or pertials cells in their stomach linning to absorb B12 therefore it is imperative they have intramuscular injections of B12 once a month for life. Sadly this very important medical fact, yes fact, not fiction, was overlooked and many there were representing doctors and groups who wished to promote untested remedies and unlicensed versions of B12, in a way that they could profit from selling them. With such a disease as Pernicious Aneamia such unregulated experimentation is dangerous as with the promoted Mythlycobalamin injection which is an unlicensed form of unstable B12 injected by small diabetic needles, as opposed to the medical application of the inventors of the cure Addison Whimple and Murphy, who stated that they, at that time thought intramuscular large needle injections aborbed into the body in a better way.
To date the Mythlycobalamin being sold at that event and promoted by the Pernicious Aneamia Society has not been tested for it's absorbtion abilties in small diabetic needle form nor has it been licensed in this country for use. Scientists are still tying to stabalise the mythl molecule from changing when it is exposed to light and heat. The Pernicious Aneamia Society also promotes vitamin intavenious drip proceedures, in which the patient must sign an agreement to do so at their own risk from a doctor whose day job is an anaethnatist.This proceedure is offered as a means to help depletion of vitamins, but as with the case of Michael Jackson any proceedure which is not conducted in a hospital via bonefide medical back up can be dangeous.
So why is the Pernicious Aneamia Society risking it's reputation in this way. Why is it asking sufferers to take an unlicensed B12 and pay the Pernicious Aneamia society for the honour of something that might not be absorbed with the correctness of the current intramuscular B12? Why did it feel this must be done at a Lobby of Parliament, where differing views existed to the way forward for the disease and those like myself were asking for parity with countries like Canada, USA, and Australia where intramuscular hydroxocobalamin B12 is applied under the international medical formulary, once a month.
To have adopted the correct proceedure the Pernicious Aneamia Society should have firstly campaigned for the licensing of mythlcobalamin and for money to be assigned to test it's absorbtion abilities, before it then launched it onto an unsuspecting and vulnerable blood disordered community who were being asked to pay for it though it did not have medical efficacy behind it.
I ask Mr Cameon and Clegg to look into these matters and also in their examination of the Canadian political system to also view how B12 is dispensed there. Furthermore oraganisations who wish to lobby parliament should do just that - Lobbies should be soley for the organisation t wishing to make it's point. It should not be for those who wish to piggy back their views, opinions, and particularly products onto other lobbyists or politicians for financial gain.
Mythlcobalamin may be the way forwad but it needs tested!!!
In the meantime please re- introduce monthly injections of hydoxocabalamin, which have been reduced to a tortuous three monthly regime in the NHS.
Lastly it says nothing for the Labour MP's who have dropped the B12 campaign since and done nothing, but perhaps if it was conditional on mythcobalamin promotion then maybe they have dropped it because they would not receive any plaudits from a difficult hydroxocobalamin campaign?? Now that's thought! Please act! Without B12 being correctly applied some patients can still die of Pernicious Aneamia. There are costs to sort this out and that's what will be looked at in the next blogs and videos over the next few weeks.
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Hi Mairi, very interesting reading. I come from a family with various auto immunune problems and I've just been diagnosed with B12 deficiency after suffering from Iron deficiency for at least 2yrs. As yet I'm waiting confirmation as to whether the intrinsic factor is absent or whether my deficiency is due to a failure of the stomach to absorb the vitamin due to Coeliac/Crohns diseases. I've been reading up over the past couple of weeks and was disturbed to see that people are purchasing Methylcobalamin and injecting themselves. The PA society recommend joining and they will give info on how to do this. I then read about some doctor who was going to Kent(?) and offered this transfusion setup. This was deeply worrying. Now I've stumbled across your blog and see that other people are worried at well. I'll keep reading for the time being. thanks for your thoughts.
ReplyDeleteMs.Sutherland, may I suggest that you get your facts straight before saying which B12 serums are used in Canada. Canada DOES NOT prescribe hydroxocobalamin, in fact, hydroxocobalamin is not available in Canada unless a compounding pharmacy makes up the prescription. Canada used to prescribe cyanocobalamin for the treatment of PA and B12 deficiency, in fact, the term, pernicious anaemia is no longer used in Canada, it is now called B12 Deficiency Anaemia. Further, the guidelines for the Province of Ontario call for methylcobalamin sublinguals to be used, no cyanocobalamin injections at all, unless there is severe neurological damage. I don't think our government would permit methylcobalamin sublinguals to be used if there was no testing in place.
ReplyDeleteThere are numerous research articles on the efficacy of methylcobalamin in treating diseases such as MS, diabetic neuropathy and yes, pernicious anaemia and B12 Deficiency. Methylcobalamin was first developed in the UK by Dr. E. Lester Smith, Glaxo Laboratories, Greenford, Middlesex in 1962. A study into the efficacy of methylcobalamin to treat PA and B12 deficiency was conducted by Karl-Gustav Stahlberg, University Hospital, Lund, Sweden in 1965, with methylcobalamin provided by Dr. E. Lester Smith. So please do not say that methylcobalamin has not been tested because that is an outright lie. Quite frankly, if I had PA, I would certainly want to use a B12 serum that is active rather than putting extra strain on my liver to convert a drug that, in its active form, requires no conversion and places no strain on the liver. I am not a medical person but it seems to me that when a person is ill, the less strain on any of the organs in the body, the better it is for them.
Pat
Your facts are wrong. Australia do not prescribe one monthly hydroxo injections at all. The regime is 3 monthly.The Pernicious Anaemia Society NEVER recommended methyl infusions to me or anyone else that I can see. Some who tried it simply gave their opinion on it that's all. As a sufferer of PA I wholeheartedly thank the PAS for all the help and support they have given me. You ought to be ashamed of yourself for bad naming the few people around the world who want to help people like us.
ReplyDeleteThere are so many flaws and holes in what you have posted Mairi that I could strain my vegetables through it. I don't know what your grievance is with the PA Society but when I needed help I was never asked to buy anything. Instead, I was given the most helpful advice which turned out to be completely accurate and gave me back my quality of life at a time when I was close to death. I was only ever advised to ask for certain tests and treatment from my own GP, which I did, and only when people fail to get this from their own doctor is advice given as to where else they can legitimately source it.
ReplyDeleteThank God that societies such as this exist and press on despite unwarranted attacks on their integrity from those who lack any real understanding of the complexities of the diagnosis and treatment of this condition.
Hi Guys
ReplyDeleteIm only going on the advice given by the PA Society who said that Australia had monthly injections. Likewise they state that Methcobalamin is not licensed in the UK for use. Im not against Methcobalamin and never have been Im against it unregulated administering via the internet and non registered doctors in the UK. As for Canada if they are using Methlycobalamin I'd certainly be interested in finding out how it is administered. They dont seem to have uniformity in Canada as I was injected at a health centre there with hydoxocobalamin to keep in line with my UK prescription so I agree they are much better at care of PA in Canada than the UK where doctors take a long time to diagnose the condition. We are all on the same side here but there are also diffferent types of PA and those who have peritial calls in their stomach cant claim to have it though they may have B12 deficeiency instead. Genuine PA patients have antibodies to peritial cells and there cant absorb B12. This is the autoimmune version of it which is different from B12 deficiency and it seems again someone is trying to muddy the waters on that. Pernicious Aneamia now in it purist form is Megaloblastic aneamia some with B12 deficiency dont have that so they dont have Pernicious Aneamia that all I was pointing out. You can have B12 deficiency and not have antibodies to peritial cells.