New UK Lyme Disease Charity - Caudwell Lyme Disease

[justy]

Caudwell's Lyme disease charity website is up and running and it looks pretty good!

https://caudwell-lyme.net/

Their manifesto is thorough:

Caudwell Lyme Disease was founded to promote the following objectives:
1. We want every adult in the UK to recognise the symptoms of Lyme disease.
2. We want every GP in the UK to know about Lyme disease, and to send all patients who have its symptoms for diagnostic blood testing.
3. We want the NHS to use the most reliable blood test currently available.
4. We want NHS doctors to prescribe antibiotics to treat patients with Lyme disease and co-infections, for long enough, and at high enough doses.
5. We want no British citizen to have to go abroad and/or pay privately to obtain either diagnosis or medical treatment for Lyme or associated diseases.
6. We want UK doctors to continuously improve their understanding of Lyme disease, and to actively participate in further research.
7. We want patients with Lyme co-infections to be tested and treated for those conditions on the NHS.
8. We want patients who are unable to work, or who are physically disabled as a result of having Lyme disease, to receive disability benefits, and all other help which disabled UK citizens are entitled to.
9. We want more research to be carried out until there are highly reliable diagnostic tests and a completely effective cure for Lyme disease and its co-infections.

https://caudwell-lyme.net/the-caudwell-lyme-manifesto/

There is a page with 421 patient experiences on, mine is near the bottom of the page. Its heart rending and depressing reading. Hopefully it will help others, including Drs to understand the suffering undiagnosed/misdiagnosed/untreated Lyme causes sufferers and their families.

 

[duncan]

What a strong and uplifting development! This is a very positive move forward for the world-wide Lyme community.

Bravo, too, to each of the 421 patients who shared their experiences. Each should be front page news.

 

[msf]

I feel no.3 is going to be the contentious one here...

 

[duncan]

#4 isn't going to be a walk in the park either....

 

[justy]

I feel no.3 is going to be the contentious one here...

#4 isn't going to be a walk in the park either....

Agreed - but how great is it that they have left nothing out (it seems) from their stated objectives.

The CEO of the charity - Veronica Mai Hughes is also a patient so I think that is good news (for her and for us).

 

[TiredSam]

Now all we need is a billionnaire with ME.

EDIT: Just to be clear, I am not wishing ME on anyone. I am wishing a billion pounds on the next ME sufferer.

 

[duncan]

I think I remember reading somewhere that Caudwell's son was first diagnosed with ME before finally getting the Lyme diagnosis.

 

[msf]

I think I remember reading somewhere that Caudwell's son was first diagnosed with ME before finally getting the Lyme diagnosis.

No! Surely not? No!

 

[duncan]

Rod Serling couldn't write this stuff. Er, when he was alive that is.

 

[justy]

I think I remember reading somewhere that Caudwell's son was first diagnosed with ME before finally getting the Lyme diagnosis.

@TiredSam - yes this is correct he HAD a CFS dx.

 

[justy]

Rod Serling couldn't write this stuff. Er, when he was alive that is.

I had to look him up!

 

[duncan]

Oh, that's too funny!

Or am I just too old...?

 

[justy]

Oh, that's too funny!

Or am I just too old...?

You MAY be too old, but it would be rude to ask. I think the real issue is that we haven't had a lot to do with his work in the UK. Well we had the Twilight zone for a bit, but we also have our own TV people, that you have probably never heard of. Its a cultural thing, not an age thing.