Just reading Martyn's latest blog post:
Yet again the question which seems to be being asked is, "Why do some people need injections more frequently than every 3 months?"
Apparently the researchers are asking this question, the PAS, Martyn, Carrie-Ann...
Why is this question continually being asked when we know that there is no evidence to prove that injections every 3 months 'do' work. None.
So why are they constantly asking why injections every 3 months don't work?
IF this illness was primarily a blood condition which, eventually, caused either anaemia or neurological damage, then the question could, possibly, be valid. It would make sense. If it was a blood condition and the blood was being repaired and the patients were still showing symptoms of anaemia even while their levels were 'normal' (and we all know the problems there) then it would have some logic to it.
BUT, this is not a blood condition, this is a metabolic condition causing DNA dysfunction and cellular damage - and the blood, because it is cells - can also be affected.
But treating the blood does not mean ALL cells are treated.
Neither does it mean the damage to cells originally caused by the deficiency is repaired.
I'm starting to feel like I live in the Twilight Zone.
Should not the research scientists be understanding the basic principles of a B12 deficiency before they start discussing how to investigate why current B12 protocols don't work?
If they did understand it, and they understood that the illness is progressive and different people got their deficiency picked up at different stages and therefore had differing levels of neurological damage - some of which was repairable and some of which wasn't - then would there really be a need to ask the question, Why?
We are all different, we all have differing levels of damage, we all need different levels of treatment.
There are trillions of cells in the human body. We are made up of cells. Cells, water and a bit of electricity.
Skin cells, blood cells, brain cells, tissue cells - we are cells. And when you get a bunch of the same type of cells together they form the right stuff - the muscle, the nerves and the brain and the skin.
And a lack of B12 not only stops those cells from reproducing and multiplying (and cells produce millions more each day) but it damages the existing cells.
And every person who suffers from B12 deficiency has a chance that some of those cells will be damaged depending on how long those cells have been deprived of B12 for. Which ones? How badly damaged? How would I know? How would anybody know?
Of course people will require different levels of treatment. Of course if enough cells have died then certain parts of those people will have died also.
How can one standard treatment regime possibly cover all the people and all the damage?
... and where is the urgency? No one knows how badly each B12 deficient patient has been damaged by the time they are diagnosed. No one knows how far away each patient is from permanent injury or even death because no one knows how long each person has been suffering cellular dysfunction.
If you have one person who has lost the use of their legs and is, for example, 2 months away from death, is it reasonable to ask them to wait 3 years to wait while scientists have a few jollies and a chat about why they need B12 injections more regularly than every 3 months?
The problem here is that we are not having to prove people need injections more than every 3 months. Because that question is quite easily answerable as it is with patients who have any neurologically degenerative condition and get assigned a dosage of medication to suit their own individual needs.
The problem here is that no one really believes B12 deficient patients are actually ill. That is the problem.
And that problem exists because no one really understood the illness. They thought it was a blood condition which was quickly and easily treated.
And that includes the scientists.
And if they are still sat around tables having chats about the same thing - then it tells me one thing - the scientists still don't understand this illness.