Its been a while since I posted an update. Maybe I lost hope? Maybe I lost faith in humanity?

How can millions sign a petition that asks that airlines dont put dogs into overhead lockers (that seems like a no-brainer) and yet people dont share this petition?

We know its a challenge to read. The problem is that it concerns a complicated disease and we needed to address it formally and factually. We aren't moaning about our personal situations or health, we aren't asking people to sign something based on sympathy, we are asking people to sign and more importantly to share this information because it is factual and it is affecting hundreds of thousands of people - many of whom do not know that they have Lyme Disease.

Its important that everyone sees how NICE puts its guidance together. We hear how people/groups feel about the guidance AFTER it is created. Look at the guidelines they produced for ME patients. Even the government was forced to debate them and they have been deemed a failure and a medical scandal.

The problem is that NICE will only accept a very specific type of data. Its a bit complicated but basically they will only use information that comes from a large group of patients that have been tested against another group under very specific and controlled conditions.

This is very difficult to do with Lyme Disease patients because once you get past the early stage, the disease can affect all of the different systems in your body. Designing a study around this is very difficult (probably impossible) especially when the persons immune system is affected so they are also now carrying (and having symptoms) from other diseases too. How can the scientists tell which symptoms are caused by which infection at this point... they cant. This means that the data becomes too "messy" to be able to decide what worked and what didnt.

Of course this means that the only data that NICE will even look at is from those studies that used the less complicated patients. Thats is, those who didnt have a great deal of problems with many systems in their body. There aren't any (acceptable to NICE) studies that looked at reasonable numbers of patients with additional infections so basically they based their guidance on the less complicated patients.

Do you see the problem?

There are a huge proportion of Lyme disease patients who were never formally diagnosed and who, over the years, have collected additional infections and problems associated with systemic disease. The treatment that the NICE guidelines proposes isnt going to be enough in terms of:
1. treating the Lyme organism (which can hide)
2. treating the co-infections
3. helping the damaged immune system to help the body heal itself
4. healing system damage

The know this!

Their arguments will be:
...that they couldn't possibly include co-infections as part of the guideline.  Why not? They are part of the disease!

...they couldn't include data on those complicated patients because there isnt any of a good enough quality. Well, there is data. There is information. There is expert advice out there - not in the UK, but out there.

Their system is flawed. They say that if there isnt any of this "gold-standard" data, they will look to other sources... but they didnt. They just asked a committee of individuals to decide. NONE of them are experts in this field or have the necessary experience and they did not ask for advice from those doctors across the world who are successfully treating thousands of complicated, seriously ill, misdiagnosed patients.

Thank you for reading this far. I hope this this will all have made sense and inspired you to share the petition. Until changes are made to the way these guidelines are created worldwide, people with Lyme disease - and those misdiagnosed with MS, Parkinsons, Fibromyalgia etc etc- will never have access to adequate treatment.