The NICE Guidelines
Firstly, I think it’s important to say none of the patients or admin team for the Lyme support group expected much from these new guidelines.
Expections were low after the crushing results of the previous guidelines published last October. The upset and distress the ignorance that filled the guidelines left us all feeling lost and facing a brick wall. We had to work hard to bounce back from the blow. A blow where our hope of days experiencing better health were slipping away from us. Not just for us, but the protection of others our fellow humans was being dismissed.
During the six months since the previous publications, we - the admin have worked closely with local MP, GP’s, world wide researchers and Governments. Members of the support group outraged with anger are often quick to blame us as admin for not doing more. They as members are standing up and challenging the medical circles and Government. Why are we appearing to be doing nothing.
We do a lot behind the scenes and members must understand that we have to keep our arguments and fights balanced because we need Government and the medical community on side to drive and encourage change. Talking and enaging with them on a balanced level helps them relate and understand. Once they can relate they are far more enthusiastic about working with us to help us.
We, as admin are here as part of the group to keep a filter on the posts which are posted by members and also offer informative information, updates and general support.
We are accused of many things. From not being supportive, being biased, being ‘on the opposite team.’
This is not the case. We have gone through a rough time recently. There have been many reported deaths on ththe group. We offer our greatest sympathies to the families and loved ones. But daily death posts can cause real upset and distress to say members who don’t have family support or are newly diagnosised. We as admin have a job to support everyone. We can’t be biased and must be fair. Our group is a support hub after all and should be a place of safety, positivity and comfort.
We are faced everyday we new problems and issues.
People can often be very cruel towards us and forget that we too, are extremely poorly with this disease. We aren’t fully fit and like other members find simple life hard without all the extras.
With the NICE guidelines we must keep pushing. Here is what has been published today;
Here is Natasha’s well written and balanced statement that the Lyme Discussion UK has posted in response to the guidelines;
The NICE Lyme disease guideline has now been published and can be accessed here: https://www.nice.org.uk/guidance/ng95 LDUK commented extensively on the draft, labelling it as ‘an inadequate tool for doctors and patients, seriously undermined by lack of evidence’. Our comments can be found here: http://lymediseaseuk.com/2017/11/08/lduk-responds-to-draft-nice-guideline/ The usefulness of the guideline is therefore called into question, with cause for concern over patients being under-treated, undiagnosed or misdiagnosed. We desperately need new research into better treatment protocols as the current treatment on offer is based on limited and outdated research. LDUK is pleased to note that some of our stakeholder comments on the draft NICE guideline have been incorporated into the final version and acknowledges the following positive aspects. The guideline may help to: -raise awareness of Lyme disease. -make it clear that patients should be treated straight away if an EM rash is present, without the need for testing. -reduce the number of people who are tested too early following a known tick bite (it can take approximately 6 weeks for antibodies to form). -make people aware that Lyme disease treatment can trigger a Jarisch-Herxheimer reaction and that this doesn’t mean treatment should be stopped. -prevent people from becoming chronically ill if they are treated promptly. People infected this year will now be able to access two courses of two types of antibiotics which is particularly important for children and people unwilling and unable to self- treat or access private care. -enable Lyme disease patients to access social care more easily. -encourage research to plug the huge holes in the evidence base on which they are built. The guideline states clearly: -that ticks are found in urban parks and gardens and not just in regional hotspots or abroad. -the limitations of Lyme disease testing. the importance of clinical diagnosis based on symptoms, signs and patient history as blood tests are not a reliable tool to be used in isolation for diagnosis. -the possibility of other tick-borne infections being responsible for symptoms. that more follow ups/reviews with patients should take place. However, there are many aspects of the guideline which concern us, including: -The guideline states that ‘most people recover completely’. This is highly misleading and based on the experiences shared in our Online Community, it is simply not the case. This statement affects the way both doctor and patient see the severity of Lyme disease and fails to acknowledge that some people never recover and are disabled. What is meant by ‘most people’ in this statement is not defined. The outcomes that the guideline committee judged to constitute “complete recovery” are not stated and neither is how long the recovery needed to be maintained for to be considered “complete”. -Impact on patients with long term symptoms: The guideline is ‘evidence based’, however there is a large and growing population of patients suffering from progressive and debilitating symptoms whose situation will not improve as a result of this guideline. Many are never treated promptly following a tick bite or an EM rash and chronic illness sets in which appears to be much more complex to treat. The guideline states that it may take ‘months or years’ for symptoms to resolve after treatment and that symptoms may be a result of ‘permanent damage’ from Lyme disease. Assessing which symptoms should resolve in time and which are due to permanent damage is problematic. There is no test to tell us when the infection has been successfully eradicated and when further treatment is or is not needed. -The guideline frequently states that patients should be referred to specialists whereas the reality is, there are no Lyme disease specialists within the NHS. -There is an acknowledgment that treatment for Lyme disease may fail and that the infection can persist between a first and second course of antibiotics but then there is a lack of clarity on persistence beyond two courses of treatment. There is no test that can tell us when the infection has been successfully eradicated and the evidence base for current treatment protocols is poor. There is concern that people may be written off after two courses of treatment. -The guideline suggests that only a small number of people experience ‘treatment failure’ but we would question this statement based on the experiences of thousands of people, shared in our Online Community - many people are still desperately unwell following short courses of antibiotics. The guideline highlights the weak evidence base for current treatment protocols; ‘the evidence on the effectiveness of antimicrobial treatment regimens used in different presentations of Lyme diseases is of poor quality, out-dated and often based on small studies.’ -Lyme disease is described as an uncommon cause of certain symptoms. We are concerned that emphasis is not placed on the fact that when this constellation of symptoms occur simultaneously, Lyme disease may be a common cause. -False reassurance may be offered to mothers about the risk of congenital Lyme disease being ‘very low’ when more research is needed in this area to back this up. What LDUK would like to happen next: The Government needs to ensure that funding is made available urgently as research needs to be fast-tracked as soon as possible and to recognise that people need help in the meantime. A reliable test must be established as well as effective antibiotic protocols which successfully eradicate the infection. Other routes of transmission need to be researched as well. It is not acceptable that patients are left to self-treat or pay to see private practitioners either in the UK or overseas in order to regain their health and quality of life prior to being infected. Doctors around the world who are open minded and attempting to help those who are chronically ill with Lyme disease have reported their licenses being under threat for attempting to alleviate suffering. In such an under-researched area of medicine, licensed medical doctors with success in treating Lyme disease should be allowed to use their experience without prejudice and fear, especially in the absence of any other help on offer. These doctors may be able to provide valuable contributions in the research arena. Until there is a better test and until more is known about how to treat patients who were never treated initially and who have ongoing symptoms beyond the treatment on offer, both the limitations and the positive aspects of the guideline need to be clearly communicated to health professionals and patients. Without careful explanation, this guideline is at risk of reinforcing the widely held misconception that Lyme is easy to treat and that long term symptoms are not due to persistent infection. The guideline also risks fuelling the stigma surrounding those patients who do not feel they have been adequately treated for Lyme disease as well as any doctors who agree with them. What will LDUK be doing in response to the guideline? As stakeholders in the long process of the NICE guideline creation, we have commented extensively, when invited, in order to point out how the shortcomings and how the guideline will affect newly infected patients and those who are chronically ill. Now that the guideline has been published, our aims are to: - Draw medical, political, public and media attention to both the useful and problematic areas of the guideline, in order to raise awareness and help dispel widely held myths and misconceptions about Lyme disease. Patients with long term symptoms will continue to be stigmatised unless medical professionals understand the far-reaching uncertainties and limitations of the evidence base on which the guideline is based. - Create a patient ‘guide to the guideline’ to ensure that patients can utilise relevant information successfully to secure early treatment. - Draw medical, political, public and media attention to the lack of treatment options available for patients who were not diagnosed and treated immediately after being infected and who are now chronically ill. - Assist the Lyme disease All-Party Parliamentary Group in any way possible, pushing for fast-tracked research and courses of action to help those who will be failed by the guideline. - Continue to raise awareness nationally to reduce the number of people with new infections being left undiagnosed, misdiagnosed and untreated. - Continue interviewing international Lyme disease experts to make people aware of different perspectives and treatment approaches. - Continue to provide support in our Online Community to help people navigate their way through this complex illness. What can you do to make your voice heard? Tell us what you think by filling out this LDUK survey. We want to hear your views on the guideline. All comments may be used anonymously for campaigning purposes (media, website, meetings, events) and by submitting the survey you are giving permission for your comments to be used for this purpose. https://www.surveymonkey.com/r/5GPXSMM Write to your MP and draw their attention to the positive and negative aspects of the guideline and the impact that this will have on your life. Ask them to become a member of the APPG if they are not already. You can find a letter template here: https://www.facebook.com/groups/LymeDiseaseUK/permalink/1597481246972241/ Make your GP aware of some of the popular myths about Lyme disease which have now been addressed by the guideline (e.g. that Lyme disease can be found in urban parks and gardens and not just in rural hotspots, that blood tests aren’t foolproof and that treatment failure can occur after a single course of antibiotics and that evidence on treatment protocols is very weak and outdated). It’s also important to point out the overall guideline limitations and poor evidence base on which they are built. Tell your story - Add your name to LDUK Press Manager Julia Knight’s post here to be contacted for media interviews or email firstname.lastname@example.org https://www.facebook.com/groups/LymeDiseaseUK/search/?query=julia%20knight%20 Share our ‘Wake Up to Lyme’ campaign video https://youtu.be/6vGTgHw_pI8 Share our ‘Wake Up to Lyme’ campaign video on your social media https://youtu.be/6vGTgHw_pI8 Take a photo/short selfie film of your story. See instructions here: https://www.facebook.com/groups/LymeDiseaseUK/permalink/1647072848679747/ Order a ‘Wake Up to Lyme’ awareness pack. Packs are free to order for our U.K. members and contain posters, car stickers, tick awareness cards and leaflets to distribute in your local community. If you are planning on holding an awareness event in your community, please email email@example.com and we can also send you stickers/balloons/insect repellent samples/collection box. Order form: https://lymediseaseuk.com/2018/02/05/awareness-pack/
We don’t sit around all day doing nothing, every one of the 8,377 members of Lyme UK are important and vital to the fight.
The admin team have been working around the clock on the Wake Up To Lyme campagin, packs have begun being sent out ready for Lyme Disease awareness month in May and our Parliamentary protest on the 1st May in London.
Please find the link below and watch the watch up to Lyme campagin video;
Please share this video.
We must get the medical & Parliamenary circles to realise that chronic Lyme is real and is a true threat to humanity.
We can take the guidelines as a defeat or we can store them, use them as ammunition and pull out all the positives rather than highlighting the negatives.
We as a group have agreed to do the latter. We knew many weeks ago the rough outcome of today and so have been working hard to fire back, putting projects and missions in place so Government and medical circles can clearly see we aren’t going to go away quietly or accept their pure dismissal.
In hard times such as these this blow can be even more hurtful and upsetting.
We must remind ourselves that we are doing the best we can.. we aren’t lying down ( even if we want to.) We also have to accept the realities. We can’t always win, and won’t always win. Sometimes we have to lose to drive us to work harder, push further. Then we have the cold hard realities of what our life has become, we grieve and bury the life we had and had planned for ourselves and are forced to find peace in the one we are currently living. With all the pain, struggles and upset. The loss we carry is heavy. We have to make positives out of our negatives. It’s not all about us and being selfish craving the high, pain free life but about saving our fellow human beings. We all have different roles and purposes. Ours just may not be how we expected but it doesn’t mean we become as bad as the people we fight against and use ignorance and dismissal as our coping mechanism.
We fight on.
Thank you to all the fellow Lymie’s, friends, family and the admin team for all your hard work and support you all continue to show.
We are truly grateful..
We will change the world in the end.