TOUCHED BY LYME: British Lord discusses Lyme in “Queen’s Speech” debate
This week has been a momentous time in the UK. Amidst a lot of pomp and pageantry, the annual Queen’s Speech marks the State Opening of Parliament and presents a list of laws that the government hopes to get approved by Parliament in the coming year.
After the Queen has presented it, Members of Parliament discuss it over the following five days. Today, as part of that discussion, Lord Astor of Hever, whose daughter has Lyme disease, made the following remarks.
(The whole thing is quite good, but I have put in bold type a few comments I hope you’ll pay particular attention to.)
My Lords, I want to speak briefly on the specific health issue of Lyme disease, which is a rapidly increasing health risk in the United Kingdom. If Lyme disease is not treated early, it can cause significant illness and devastate affected patients’ lives. This is what life has been like for my daughter, and I declare this personal interest.
Many noble Lords will be aware that ticks harbour Lyme disease, as well as many other equally serious infections. These infections are passed to humans and animals via the bite of an infected tick, due to and during their method of feeding. The danger is no longer confined to rural areas, with ticks now being found in every county of the United Kingdom, and increasingly so in urban parks and people’s gardens.
If Lyme is diagnosed and treated early, the chances of a full recovery are good. However, failure to diagnose early and treat adequately can result in serious consequences to the patient. Tick-borne diseases that are misdiagnosed or neglected result in complicated infections, which have devastating and multisystemic consequences. Patients can be left with extremely debilitating and chronic symptoms, needing a wheelchair or completely bedridden, and enduring intense and relentless suffering.
Despite the increasing threat that Lyme disease poses to public health, there remain no suitable UK official guidelines for diagnosis or treatment. What we do have is outdated National Health Service guidance, relying on guidelines written by the Infectious Diseases Society of America and supported by the CDC. According to the National Guideline Clearinghouse of America, the IDSA-CDC guidelines are not fit for purpose. They are outdated and do not take into account recent developments in the understanding of these complex infections.
The absence of adequate guidelines is closely linked to the fact that insufficient levels of training are available to our doctors. Even if a positive test is obtained, expertise is seriously lacking, both in value of interpretation and in dealing appropriately with the illness. That stark statement is in accordance with multiple testimonies from patients. Expert patient input is crucial in turning the situation into a positive solution, not only for patients themselves but for the National Health Service as a whole.
Failure to meet the challenges of Lyme disease has led to unknown numbers of people becoming infected, but not diagnosed or treated. It could amount to tens or even hundreds of thousands of people. The UK now finds itself in a situation where patients with diverse illnesses and symptoms might actually have unrecognised Lyme disease.
In these patients, the infection could have reached a stage where treatment will be difficult and lengthy and will require the supervision of expert physicians, trained and experienced in this complex disease and the frequently occurring co-infections.
The cost to the Exchequer in terms of numbers of patients unable to work and using the NHS for serious health problems must be a truly staggering amount. Neither this country, nor affected patients, can afford this. Early recognition of symptoms and early treatment would save our National Health Service a great deal of money.
Given the huge cost, both in terms of the impact on the patient’s quality of life and, in practical terms, on our health service, it is clear how important it is to prevent as many cases as possible reaching this stage. Improvements in the training available to our doctors should be made a top priority. However, awareness among the general public of the risk posed by ticks should also be prioritised.
There are some very simple measures that can be taken to reduce one’s chance of becoming infected with Lyme disease. However, few people have any knowledge of this. How can we safely, and with a clear conscience, encourage children to play outside and make the most of the outdoors if we are carelessly allowing them to risk their health by contracting one of these insidious, infectious diseases?
Outdated guidelines, unreliable blood tests, insufficient training for doctors, a lack of tick-borne specialists of calibre and a widespread lack of awareness among the general public of preventive measures are all factors that are leaving us alarmingly ill-equipped to tackle a problem that poses a rapidly increasing risk to every UK citizen.
In the light of this, I ask my noble friend what his department is doing to ensure that GPs receive training in Lyme disease that is mandatory and thorough enough to allow them to make clinical diagnoses. Proper awareness will prevent the number of Lyme disease sufferers growing.
Lyme patients want to regain their health. They want to get back to work. They wish for nothing more than to regain control over their lives and take part in all the activities they enjoyed before they became ill. Most Lyme patients have the will and determination to achieve this.
But none of these aims can happen if they are sidelined and hobbled by misguided opinion—which includes the current health system situation, with its constraints and limitations.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org
Nice speech.. wonder how many heard it.
Thank goodness someone in a position of power spoke out about how antiquated the reports put forth by tne CDC. Their attitude toward this escalating disease is shocking and reckless. I have struggled with this disease for 18 years. Moved to a new town and my new Dr. Told me flat out long term Lyme Disease does not exist. Looking for new Dr.
Oh I hope they truly act on this! The effects of Lyme are many. We need focus, we need a cure.
The world has looked to this country for leadership on many things. It has not taken the lead on Lyme disease. This country steadfastly refuses to look beyond it’s borders and acknowledge what other countries may do well. This current administration will not be a leader either. Other counties are beginning to understand this too. I hope other countries will not wait for this country but go out and do what is right. Maybe this country will have to be a follower for once for something positive to get done. Let us hope so. Go UK!
Still to late for those like myself who went to drs after seeing what I thought was a poppy seed on my ankle and picking it off to reveal a gush of blood redness and unable to it foot to floor through pain all with in 12 hrs
To explain the seed like thing I picked has resulted in bright red area increasing up to above knee
Only to be told it must be a allergic reaction !!! And take a anti histamine ( bearing in mind I have had ms for 22 years and a fighter to daily symptoms and pain ) knowing I’m no light weight and only ever attend drs for real emergency
I even told them it looked like a infection because how hot red and swollen my leg was
But no disregarded even second attempt at drs while infection spread to inner thigh and again 3rd appointment different dr confirms oh sounds like a tick still no correct medication
Journey to A & E where they cut the mouth and head parts out and a course of antibiotics that was June / July 2016 after debilitating fatigue and headache admitted to hospital neurology where it was confirmed lymes in November 2016
Fighting ms is one thing but I’ve done it 22 years
To attempt to fight this evil lymes is impossible it’s took what life I had left after ms had took the best and it continues daily to finish what it started and destroy me
Low dose naltrexone. Stem cell therapy
Thank you.
About time. True reach of infection and symptoms isn’t appreciated by my GP surgery – and I live in the heart of Thetford Forest! American Muntjack probably brought the infected ticks here 2 centuries ago. Deer MUST be controlled . Current numbers incalculable due to poor management by Forestry Commission. Recognition of growing epidemic and need fot infection control should be govnt priority.
Chronic Lyme disease is, what ever protocol is used, untreatable. The most -up to date guideline- is the ILADS guideline.
90% are struggling for 8 years ore more to get a diagnose. Far to late and damage is done. Most patients are disabled. A pandemic wave crosses the world. Most of the doctors don’t believe in chronic Lyme. And that’s where this scandal starts.
Why do they not go to the source? Wipe out the ticks.
Start spraying the woods and such with something to kill the ticks!! The state of
Maine has started spraying test areas.
Why they shy to talk about it?? UK must quickly wake up. Germany is even better updated about it.
Do you know any serious doctor in UK who can treat Lyme D like americans dr do??
Two organizations in the UK who may be able to suggest resources:
https://lymediseaseuk.com/
http://www.lymediseaseaction.org.uk/
Well said! This should be distributed world wide!
Lyme sufferers want to get well but it is a physical challenge not just a mater of will or determination. It also takes funding that is hard to achieve when you cannot work.
The pace is picking up a bit – good. Can’t wait to find out that they consider me worthy of treatment in my country. Will I still be alive?
How tragic that the world’s civil servants and politicians almost always support the narrow and scientifically flawed opinions of the panel of ‘experts’ appointed by the Infectious Diseases Society of America UNTIL they themselves or someone in their family is struck down by Lyme disease. When Lyme hits close to home, the public servant concerned tends to suddenly wake up to what is really happening in the medical world: people with a horrific, debilitating disease are being denied treatment based on narrow and in some cases scientifically untenable assumptions. Some of the views put forward by the ‘experts’ are controversial and the subject of scientific dispute, but sick patients who question such views are stigmatized. Even more seriously, in some countries doctors who do not follow treatment guidelines based on these views are losing their licenses. Norway is a shameful example of this. After Dr. Rolf Luneng lost his license there, doctors in Norway and in many other European countries have been deterred from helping patients by the threat of the witch-hunt.
The scientific literature is full of evidence-based, peer-reviewed studies that contradict opinions published by the ‘expert’ panels, but the ‘experts’ either attack these studies, often on methodological grounds that border on the contrived, or simply ignore them. Well done to Lord Astor of Hever for speaking out, but why does it so often take the serious illness of a close family member before public figures can see the flaws in the ‘expert’ position and the inadequacy of the official treatment guidelines?