When I developed Pernicious Anaemia just under a year and a half ago, I was surprised to find my doctor asking me whether I knew anything about my long term PD meds, and whether they could have caused it. This on the basis that I am not a vegan (I am an occasionally lapsing vegetarian) and should not have developed it. Not often that docs ask such questions. Anyway I looked it up, first finding that long-term l-dopa use had been found to be significant in a study of longterm users now in elder care facilities. Further enquiries led to an advisory by Kathryn Holden, the PD dietician.

When I looked into the non-PD situation of those with pernicious anaemia I found that their case is even worse than ours! There has been, largely due to folic acid supplementation of wheat flour, a masking of the condition which does not show up on tests if folate levels are ok. Leaving millions of people with a deficiency medicine has largely forgotten, only treats in a generic way and does not even care to tackle.

So patients are doing it! Lobbying governments, learning about it, establishing the facts, and supporting what few professionals there are around to campaign for better treatment. Just like the PD community. And many other communities of people with conditions that really adversely affect quality of life. In the case of Pernicious Anaemia patients are learning to self inject the B12 that they need to raise their quality of life.

With PD we are constantly telling health professionals that our quality of life is deteriorating, often to be met with the bland statement, 'you are looking well today'....... so we go away for another 3 months or a year, or whatever gap there is till the next appointment, when we get more of the same.

Other people also looking really hard are all those with auto-immune conditions that are only partially responsive to treatments, those with orphan conditions that get little publicity, those with conditions where the treatments are frankly harder to tolerate than the condition, which is bad enough for people to take the medicine anyway.... conditions which medicine is still debating the existence of, and which medical insurance companies love to support denial of.

All in all a lot of people actually pushed into having to move into DIY medicine in order to find something, anything, that will give them some kind of quality of life by boosting their energy, decreasing their pain, allowing them to move more freely, or function better.

Time, I think, that medicine and science started to acknowledge that there are people out there, struggling with conditions of all sorts, who are not malingerers, and not deluded, and who need them to listen.

On the other hand there is some good thinking by the white rats and citizen scientists in our midst, and hurray for them, they give us the impetus to question treatments with unacceptable side-effects, and try things that can and often do help. Nowadays ginger is often recommended as an anti-sickness measure in all sorts of situations, including ante-natal. Because it is safe and effective. Ordinary people knew this. Drug manufacturers on the other hand were happy to foist thalidomide on people around the world, and people took it, trusting in modernity as having the only answers.

Today we know that science is answering lots of questions, but that treatments are slow to emerge. We also know the things that help us, and when there aren't any, we look for ones that might. Largely because what is prescribed often brings problems of its own.

Is this because the right questions are not asked of the right people? Do we need to be part of a movement that is talking about these things, something bigger than the PD community?