The Lyme Disease Discussion Group are currently working extremely hard to challenge the NICE guidelines that were released and outlined October/November last year.
You may remember me telling you how really we hadn't made any real progression in the goal of better care and acceptance of our illness.
Now as tick season is upon us, the group are wanting to challenge the health system and the Government:
This statement is from the Lyme Disease UK website and can be found there if you want to do your own research.
Here it is:
Our Response to the Draft NICE Guideline
‘An Inadequate Tool for Doctors and Patients, Seriously Undermined by Lack of Evidence’
Lyme Disease UK is a registered stakeholder in the NICE Lyme disease guideline writing process. As the UK’s largest patient support network, taking part in this process has been an important priority because once finalised, the guideline will determine care for Lyme disease patients for the foreseeable future.
The aim of our response to the draft guideline was:
1) To register dissatisfaction with and rejection of many of the aspects of the guideline which make it an inadequate tool for doctors and patients dealing with the reality of Lyme disease in the UK.
2) To offer constructive criticism by suggesting the removal or rewording of damaging pieces of information in an attempt to make the final draft (with all its major limitations) as good as it can realistically can be, in case it helps even a few people in their personal experience of Lyme disease.
The fundamental flaw running through the guideline is that it has been constructed from the same problematic, prejudiced stance as all previous consideration of Lyme disease. Overall the impression is that ‘unnecessary’ antibiotics are a greater threat to the patient than uncontrolled Lyme disease.
The guideline is ‘evidence-based’ but in a context where there is an overwhelming lack of evidence, the usefulness of the guidelines is called into question and there is great cause for concern over the harm they may cause.
Throughout the guideline, we found areas of inconsistency and error. We commented on these in detail, suggesting improvements wherever possible as well as challenging assumptions and questioning evidence.
There were some themes which we felt worth drawing out in our general statement and these were:
1) The guideline is seriously undermined by the lack of evidence
The lack of evidence encountered by the committee throughout the preparation of the guideline is only obvious on reading the evidence reviews in the full version, and only briefly stated in the explanatory pages of the short version. There are large gaps in critical areas, especially around Lyme disease prevalence, testing and treatment. Yet, recommendations have been made in the face of this lack of evidence, often based on the experience of the committee members rather than science. This shows the clear and urgent need for more research.
2) Important issues only implied not stated
The way the guideline has been written means a number of issues have been acknowledged by implication but not stated explicitly. For example, there is an implication that testing is not absolutely reliable but this is not stated clearly anywhere. Likewise, it is implied that treatment sometimes fails but not stated explicitly that this is the case. And while persistence of infection after therapy is implied, nowhere does the guideline state clearly that persistence occurs.
3) Important problems not addressed openly
The guideline fails to inform doctors that testing cannot be relied on to rule out Lyme disease, it fails to encourage doctors to use their judgement to make a clinical diagnosis, it fails to point out that the treatment protocols on offer are not well researched and foolproof, it fails to point out that persistence beyond short courses of treatment is possible and it fails to point out that person to person transmission is possible, beyond a weak acknowledgement of congenital Lyme disease.
4) Lyme ‘Specialists’ – do they exist in the NHS?
A ‘specialist’ requires training, experience or both of these. Many parts of the guideline rely on the presumed expertise of ‘specialists’ and yet by any definition of the word, the UK has no NHS Lyme specialists. The end-point of many trains of advice in the guideline is “refer to specialist” but this is an empty recommendation if there are no doctors with true Lyme expertise to refer to.
5) Uncommon symptoms and circular logic
Many of the research papers, diagnostic clues and treatment recommendations revolve around a small set of signs and symptoms generally understood to be uncommon, at least in the UK. Apart from the obvious inclusion of the (not universal) EM rash sign, these are; lymphocytoma, facial palsy, heart block and ACA (acrodermatitis chronica atrophicans). The common, disabling symptoms suffered by many UK patients such as pain, fatigue and cognitive dysfunction feature far less in both evidence and recommendations.
As a result, the guideline seems to be built around consideration of a few signs which are uncommon but observable, more reliably identified by the current testing regime and feature more in the research literature. In contrast, some more common and disabling symptoms, which are difficult to measure, feature less in the literature and may well be associated with testing failure, have been given less prominence. It seems significant that the symptoms which are poorly researched but debilitating are also associated with poor identification by testing. This does not seem to have been remarked on by the committee.
6) Person to person transmission
This was a section in the original Scoping document and clearly was interpreted to include blood products and sexual transmission as these were included in the evidence search. No research of the right standard was found but the subjects were not mentioned at all in the short guideline, only congenital transmission being addressed. We consider it would be responsible to draw attention to the lack of evidence and advise precautionary measures until certainty is established.
7) Tackling misconceptions and bias
As Lyme disease receives more attention in the media, and doctors continue only to be exposed to the prevailing view, misconceptions, myths, misinformation and assumptions abound, positive communication between doctors and patients becomes harder. A clear and accurate guideline would have gone some way to righting this situation. However the vagueness and complacency of the guideline will do nothing to challenge these prejudices and in places it will reinforce them.
8) The serious reality of Lyme disease
There is almost nothing in the guideline which gives any clue to how devastating Lyme disease can be, and how devastating it is for so many. This is an important omission and misrepresentation because it will colour how doctors view the implications of a correct diagnosis and treatment, risking their treating it as a trivial illness, likely to have no long-term complications. It will also colour how seriously people take tick-bite prevention strategies. Part of what feeds this trivialisation of Lyme disease is the ignoring of the impact of co-infections on the difficulties in treating tick-borne infection.
9) Only a subset of Lyme patients is covered by the guideline
Whilst this guideline may provide some improvement for newly infected patients with an erythema migrans rash or who are seropositive, there is no help for those patients who are seronegative or those who don’t respond to two courses of antibiotics. There is no acceptance of the need for clinical diagnosis, nor acknowledgement of the large percentage of people for whom treatment is likely to fail.
We have made over 150 comments on the draft guideline, with significant inputs on:
Prevalence and awareness
Diagnosis of EM rash
Testing especially IgM/IgG and false positive issues
Lack of specifically trained Lyme specialists in the UK
Antibiotic treatment recommendations and the poor evidence underlying these
Recommendation that follow-up appointment is always made at the time of prescribing first antibiotic course
Interpretation of persisting symptoms
Person to person transmission
The shocking, unjustified and misleading view that “most people recover completely”
Manifestations of Lyme disease in children
Thank you to everyone who dedicated precious time and energy helping us to formulate LDUK’s stakeholder comments.
We hope that at least some of our suggestions will be taken on board to the improve the quality of this highly inadequate guideline, enabling doctors some freedom to use their clinical judgment in the absence of a reliable test, properly evaluated treatment protocols and a test for cure of the disease.
You can download our response to the draft NICE guidelines in full from the below link. Please be advised that the document is 90 pages long.
With the All Party Government Group finally being formed and meeting regularly, we are hoping to get the guidelines amended and for more to be done.
New York have already started putting signs up in around their parks, across the State.
Here is there poster:
Displayed in an eye catching orange and educating people on prevention methods.
Hopefully our parks and holiday destinations will begin to do this too.
I just wanted to share with you some jokey and scary pictures that are eye-opening.
We all laugh and joke when ordering meals are a nightmare - but they really are. It gets to the point where we can't simply 'just go out'. Restaurants have to be rung in advance, food has to be taken and arguments at the table, always happen. A simple social activity, that is no longer simple or at times 'doable'.
People think you are being fussy and you feel like you are causing trouble but their dismissal and ignorance towards your intolerances can be extremely detrimental.
We always have CRAZY symptoms that often sound made up because they are that odd. Believe me - they are odd to us too. They are happening to us and its an immense strain having to accept them AND deal with them.
Being aware and educated is essential.
This is definitely me ! HOOKED UP TO MY BOYFRIEND (IV) AND COLOURING.
Some jokey but 'reality' cartoons.
Please clue yourself up and get ready to face tick season full on.
I hope you enjoyed the pictures and laughed at a few. I know I bang on about my disease a lot but it's a huge problem that the world needs to wake up to. I do this so I as a human being get the care and protection I deserve and help others receive the same. We have to drive change for the future and that starts with all of us.
Our personal family business, are pushing for change within our industry and raising awareness.
We will not be silenced and we will in the end get results.
'We may lose a battle, but we will win the war.'
Thank you for reading.
Feeling sluggish and rubbish when you have woken up? Get boosting up on bananas the more the better - they will help settle your stomach, boosting digestion, they are a mood enhancer, they will give you the energy you need and keep you full. Buy my book for banana receipe ideas.
Wake up every morning and ATLEAST have one glass of lemon water before doing anything else! Ideally try to drink a litre of water. The lemon wakes up your digestive system ready for the day and has great cleansing properties.
Check your dairy and meat intake - dairy can sit in your system for up to seven days unable to digest properly. Meaning other foods also get neglected and nurtients aren't absorbed properly and you feel extremely bloated. Go and smell your food bin, your stomach will be in that state. Rotting foods in your belly - hmm nice.
DO NOT FEAR CARBS - THEY ARE NOT THE ENEMY! CARB UP!!
Bananas, Rice, Potatoes, Leafy Greens, Corn, Beans, Lentils etc PACK THEM IN GO MAD.
NEVER COUNT CALORIES - NEVER RESTRICT!! These restriction 'starvation' diets who tell you to only eat 500 calories a day then have a treat day - where you binge out and eat WAY too much, is simply messing up your metabolism and on your binge days yours body stores all the fat meaning you gain weight because it knows it is going to go back into starvation mode and needs to hold onto every little thing it can. HELLO WEIGHT GAIN.
Life is too short not to live it to the full, making yourself happy.