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ME Association Lyme Disease tests

H

Humanrights

Messages
47
The Cheif medical officer
Excepts other lab tests.
Other than those from what was HPA.

John Caudwell campaign

Can't link I don't know how to on my Iphone
 
justy

justy

Donate Advocate Demonstrate
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An excellent and full response from Veronica Di Grigoli, who works for the Caudwell Lyme charity

The HPA no longer exists and Lyme disease testing is carried out on behalf of Public Health England by the Rare and Imported Pathogens Laboratory (for patients in England, Wales and Northern Ireland) and by the National Lyme Borreliosis Testing Laboratory at Raigmore Hospital (for patients in Scotland). The test kits they use for western blots have been independently verified by five scientific teams and they have a sensitivity of 57% at the best estimate and just 23% at the worst, which means blood infected with Lyme borreliosis that is tested using these kits stand a statistical probability of obtaining a negative result ranging from 43% to 77%. This is partly because of the limited native antigens in the test: there are 25 strains of Borrelia which cause Lyme borreliosis and the test kits currently used by these two testing laboratories only contain two of them, excluding the strain (Borrelia Garinii) which is proven to be the commonest strain in the United Kingdom.
The charity I represent, Caudwell Lyme Disease, considers this an unacceptably high rate of false negatives and is currently in negotiation with Jeremy Hunt and Simon Stevens to campaign for a superior and more sensitive test.
Public Health England has withdrawn the allegations made by HPA against foreign testing laboratories which use CE marked testing kits in formally accredited laboratories as unfounded. Therefore I request that you remove this misleading information from your website and provide more reliable information, which can be obtained from the following web page:
https://caudwell-lyme.net/lyme-disease-testing/
You may also be interested to learn that in a survey of 500 Lyme disease patients, Caudwell Lyme Disease found that 47% of patients with Lyme disease confirmed by erythema migrans rash or positive serology had been given a diagnosis of Chronic Fatigue Syndrome by their doctor.
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justy

justy

Donate Advocate Demonstrate
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5,524
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H

Humanrights

Messages
47
What I want to know how do be sue the B's.
:devil:
This is a change of policy:
The original policy verses the new.
Or I have you against a wall.:alien:

I was told to go to Holland and get treatment there while the NHS treatment was a psychiatric hospital and taking off
my antibiotics.

They breached international law EU even if we leave it's still the law.
So its Human Rights

But the Solicitors have something else too do.. or they try and do medical negduclance but your times up.
3 years is up still we don't want to take the case on. More excuses.
I've got the same with the council they have been in denial about Tick.
I have had to move.
I ended up in council Accomidation.
They don't like that. It was their fault.
For allowing the environment to deteriorate. I should be in hospital.
The NHS doctors should tell the council
but they refused. I don't know what the policy in Scotland is?
As I phoned them by accident and they said we are not allow to talk to you in England.:zippit:
 
D

duncan

Senior Member
Messages
2,240
justy said:
Hello! Not seen you around in a while - been wondering if you were ok?
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Dealing with the ups and downs with this disease like all of us. Harder to write recently. But I am always reading what all you excellent people are writing and saying, and it always brightens may days the courage and intelligence and resolve I find here.

I couldn't pass up the opportunity to joyfully point out how out-and-out silly some of the TBD statements are. One almost gets the sense someone writes these drivel sentensces believing no one will ever question what is written down. "There is no biological evidence etc etc..." BULL. That's just scary wrong. The really crazy shit of it all is they get PAID to conjure this dangerous nonsense.

But thank you so very much for asking, @justy
 
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H

Humanrights

Messages
47
duncan said:
Dealing with the ups and downs with this disease like all of us. Harder to write recently. But I am always reading what all you excellent people are writing and saying, and it always brightens may days the courage and intelligence and resolve I find here.

I couldn't pass up the opportunity to joyfully point out how out-and-out silly some of the TBD statements are. One almost gets the sense someone writes these drivel sentensces believing no one will ever question what is written down. "There is no biological evidence etc etc..." BULL. That's just scary wrong. The really crazy shit of it all is they get PAID to conjure this dangerous nonsense.

But thank you so very much for asking, @justy
Click to expand...
 
H

Humanrights

Messages
47
I went to the Lyme meeting last year at the parliament.

Chris Newton told us that the HPA/pub health thought we were an island hence the numbers of Lyme were so low.
Birds fly all over the world
Then they cross the sea to the UK the magically have Tick with no Lyme or
Cephlitis.

I went to a HPA meeting in 2006 Dr O'Connell thought her test was the best.
She thought why the other labs produced
Results was the samples were cross contaminated.
 
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