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UK Gov response to lyme testing petition

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
A while back there was a petition on change.org asking the British government to:

Develop accurate NHS tests and effective treatment protocols for Lyme disease

Today the Department of Health issued a formal response to it. I can't see any reason not to reproduce it in full here:

The Department is commissioning three separate systematic reviews on the diagnosis, treatment and transmission of Lyme disease to provide evidence to inform future decision making. These will be put into the public domain on completion, which is expected to be in autumn 2017. NICE guidance on diagnosis and management of Lyme disease is currently in development and expected to be published in July 2018.

We are not aware of any evidence that very large numbers of cases are undiagnosed and untreated. Current tests rely on detecting an antibody response and as this often occurs after symptoms appear, General Practitioners (GPs) are advised to treat patients empirically using their clinical judgement rather than relying on a laboratory test. Thus treatment can start immediately and does not depend on a laboratory result.

All cases of Lyme disease confirmed by laboratories in England are reportable under legislation. Following consultation, legislation does not require notification of clinically diagnosed infections apart from very rare cases of encephalitis. As only a proportion of infected individuals present to GPs with symptoms, the actual incidence of infections would remain unknown even if reporting of probable cases based on clinical observations was complete.

Tests used in the National Health Service (NHS), Public Health England (PHE) and national laboratories across Europe are well established, and are highly reproducible between laboratories. International External Quality Assurance schemes are in place to ensure consistency between different tests centres. Commercial manufacturers and international academic groups have research programmes into improved tests, and PHE with the Liverpool University Health Protection Research Unit also has a small research programme. PHE also have links with groups in the United States and Europe investigating new diagnostic techniques.

All medical training includes elements on infectious diseases and their mechanisms of transmission, and in the United Kingdom (UK) the medical revalidation programme ensures that specialists are up to date in their field. A number of infectious disease clinics across the UK see cases of Lyme disease, as do neurology and rheumatology specialist centres. In addition, PHE have appointed a new consultant who will be working with selected regional clinics as well as opening a new service to support the management of Lyme disease.

The National Institute of Health and Care Excellence (NICE) and Lyme Disease Action produce guidance and training modules for General Practitioners, and PHE has a helpline for doctors as well as running GP training days. Specialist doctors have access to the literature on Lyme disease and are trained in the recognition and management of the disease within their higher professional training and continuing professional development.

Services for the treatment of Lyme disease are commissioned locally and are the responsibility of Clinical Commissioning Groups. NHS England expects commissioners to provide services based on local population needs.

All treatment for Lyme or other conditions should be evidence based, and targeted at the disease mechanisms underlying those symptoms. Each patient should be treated according to the pathological process giving rise to those symptoms. If there is no evidence of active infection, long term antibiotics are not appropriate and in many cases have caused significant harm.

The National Institute for Health Research (NIHR) welcomes funding applications for research into any aspect of human health, including Lyme disease. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the scientific quality of the proposals made.

Lyme Disease Action, the local authorities in the New Forest and other areas, together with PHE already provide website information and leaflets on Lyme disease and tick-borne illnesses. Public awareness materials produced by PHE are available on GOV.UK and NHS Choices. PHE is also involved in a number of local and national tick awareness campaigns that are run annually at the start of the tick season, including coverage on national television.

Department of Health

Link to petition and response: https://petition.parliament.uk/petitions/113475
 

Large Donner

Senior Member
Messages
866
The whole reply is based on the notion that lyme disease is just a little tic bite that gives you a rash for a week or so and you can get cured with a weeks worth of antibiotics and that GPs can manage this condition based on the NICE guidelines completely ignoring the issue or chronic lyme.

We are not aware of any evidence that very large numbers of cases are undiagnosed and untreated....

means.....

"We can therefore completely dismiss the issue of chronic lyme"
 
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duncan

Senior Member
Messages
2,240
Pretty sure NHS testing is C6-centric. The testing is calibrated around three species. Any species or strains outside of that calibration might not get picked up.

I am fond of the C6 because if you test positive, and stay positive, then it's really hard for them to deny you've Lyme, even after treatment. But many people I respect for their knowledge of Lyme say the C6 in the UK is too insensitive to the strains appearing there. For instance, a year or two ago a new strain that is specific to Scotland was discovered. And species like B miyamotoi - which is sweeping across North America AND parts of Europe, will not be revealed with conventional testing.
 

msf

Senior Member
Messages
3,650
´We are not aware of any evidence that very large numbers of cases are undiagnosed and untreated´ (my italics).

To paraphrase Hitchens (because I can never remember the exact quote), anyone who says this can already be discounted from the debate.
 

Large Donner

Senior Member
Messages
866
We are not aware of any evidence that very large numbers of cases are undiagnosed and untreated

This statement is a proven fraud in itself. One can say, "we do not agree with presented evidence that x, y or z is the case" ...... one can say "it has been disproved that x, y or z is the case" etc ......but to claim that they are not aware of any evidence that lyme is under diagnosed proves that they have no desire to collect accurate figures on the prevalence of a disease.

Once someone has presented such evidence to you it is evidence full stop. It's a different matter to say "that is weak evidence", but to blatantly ignore the evidence or to go out of your way not to search for prevalence diagnosis and misdiagnoses is the only qualifying reason to make such unqualified statement as...

We are not aware of any evidence that very large numbers of cases are undiagnosed and untreated

They prove by the wording of that statement that they have no desire or believe they have a duty of care, to try to seek out the evidence themselves.

As long as we put our fingers in our ears and cover our eyes there is no evidence.

So now the next step is quite simple and that is to present them with the evidence and ask them if they are previously on the record as ever having disputed the validity of that evidence.

If they have never disputed the evidence previously on the record they cannot now claim suddenly that the evidence has no validity without an open and public independent investigation.

If they have ever disputed the evidence previously then their original statement is a lie.
 
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msf

Senior Member
Messages
3,650
I like your logic, @Largedonner, but unfortunately NICE (moronic acronyms and treating ME patients badly seem to go hand in hand in the UK) doesn´t have a great record of acting logically.
 

Large Donner

Senior Member
Messages
866
I like your logic, @Largedonner, but unfortunately NICE (moronic acronyms and treating ME patients badly seem to go hand in hand in the UK) doesn´t have a great record of acting logically.


True. But the response is from the Department of Health. I'm not sure though what responsibility they have on determining prevalence statistics of diseases. One would think that they or some body under them does have such a responsibility, so to claim lack of awareness of evidence for or against such a dispute is disingenuous.

Watch this space for feck all to happen though. :meh:
 

meandthecat

Senior Member
Messages
206
Location
West country UK
Not Interested in Collecting Evidence.

NICE is such a hideous acronym, conjouring up all the things one was supposed to be as a child, for the convenience of others. It also carries with it disappointment being the name of a cheap biscuit, a substitute for the real thing..
 

Large Donner

Senior Member
Messages
866
I think that body is NICE, but I may be wrong.

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