A Workshop on the Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-borne Diseases: the Short-Term and Long-Term Outcomes here
Below is a phonetic transcibing from the Video cast apologies for mistakes but I do not want to change from the original state other than the spacing to assist those with Neuroborreliosis who have difficulties reading.
Susan O’Connell, M.D. Consultant Microbiologist Head of the Lyme Borreliosis Unit Southampton General Hospital Thank you very much indeed. I would like to express my great appreciation, for being invited to this.
I am from the UK, I thought I better express the fact that I don't have any financial professional conflicts of interest.
Also coming from a different health care background as well. And insurance companies by and large don't feature it very much at all.
So thank you to the IOM it has been a privilege to be here.
I have heard some wonderful work being talked about over the last couple of days.
And I would like to say thank you very much indeed to the patient advocates that are here, because it is really valuable.
And I just hope we can go forward in a collaborative spirit from this whole meeting.
I am afraid I would be repetitive.
Because I will say quite a few of the things that you have heard.
I think one of the things in this area is case definitions and diagnostic criteria,it is obvious that we don't have agreed definitions at the moment.
I think, we actually need to try and get close to agreements on these areas,very different terms listed here.
Because it is crucial. Both for the diagnosis and the appropriate management of patients now, patients suffering now.
And also for the research efforts that we want to go with, for the future. Both in basic science and in the diagnosis and proper management of these conditions.
I am thinking particularly of Lyme.But obviously the other conditions as well.
Now, I think, another big area. I come up from both a clinical and laboratory background so I am going to talk about lab tests for the moment.
And, I think, we all agree we need improved diagnostic tests for all the tick-borne diseases. And I am concern courageed by the progress I have heard.
We should acknowledge also that zero tow logic testing has improved since the 90s. We need, I do feel strongly, we need now to review the current state of play as far as 2 tier test sing concerned and time we have a workshop on this.
Things moved on incredibly. I don't think we need to use immunoballots to the degree that we have been over the years. The new modern recombination peptide base tests have a real place to play here.
And I would urge the IOM to consider seriously promoting the idea of a workshop on this.
I also feel that we need a high volume of sera, from a large number of both patients, normal controls, and Patients' from other disease groups as well.
To produce a repositor, serum, that we can use, for evaluating new tests. And as they come along, we only have relatively small serum panels at the moment.
And we can do various other things from the point of review of reviewing what is available in the current tests as well. And I would reiterate,education, education, education from the point of view of using these tests from the point of view of the disease itself, to health care professionals, to the communities.
Just if I can just run briefly through clinical aspects. Why do some people do poorly and what proportion of people who gets infections do poorly?
We early diagnosis of treatment is very important.
Again I come back to education. Both for health care professionals and also people that are likely to be exposed. We have heard wonderful work over the last couple of days B various different possibilities for why patients, some patients do not do well.
And I would also flag out the point that some patients actually are misdiagnosed. I do not have Lyme. They have other conditions.
Equally well, we are missing Lyme in patients.
We need to begin considering both the over and under diagnosis of the condition.
Whatever the diagnosis, the patients are sick and they need help. And I would like to say one idea. And that's that we need to resort a long-term study of patients.
Who have got -- who have a Lyme label,persistent infection, chronic infection, call is what you will.
And I wonder if advocate groups could help in the recruitment of this?
To assess accuracy of d possible mechanisms,treatment, management, including and supportive approach.
One thing I would like is patients not shown to have Lyme in this group, don't just shut them away but actually continue to manage, to care for them. And go ahead.
By repositor as we spoke before. Maintain the various research things,and the prevention.
I am sorry my time is up.
But how will we sell the human behavioral factors as far as prevention is concerned?
Paul Mead talked about this early on. I really do think we need again education for health care professionals as well as obviously people living in the community, and I am well out of time.
So I apologize.
********************************************** Questions and responses
Question from Dr Cameron
Dr. O'Connell had raised a very important question, which is, could we ever get along in a research project that would make advocates, doctors that see chronic manifestations of Lyme and early Lyme and come up with a reasonable design that everybody is happy with?
Never will be anything Beaver but this particular meeting today, shows that we could all be in the same room and share something, in common. And some goals. So that's encouraging.
But what I want to mention, is that when Dr. Aronowitz said the case study with the vaccine,is that, you know, if you don't have fairly decent balance between, you know, the community groups, and the doctors that did the vaccine, you can design a study, vaccine, that fell apart over some logistic issues, definition of early Lyme, late Lyme,definition of effectiveness.
So for a whole, you know, pharmaceutical company to go to that much work and investment and fall apart because of poor communications between different stakeholders, I just think that these two days show that if we all take, you know, what the different definitions of chronic r acute, co-infection, and,perhaps, instead of having only one out, come and have 2 or 3 important outcomes that are important.
And have different people run it, instead of only one stake holder involved. That we could, you know, probably design something.
We hope to design something.
Dr. Lian, who did a case control study from Massachusetts, that was pretty good at long-term follow-up. We get something from every study.
But I think, I am more optimistic after these two days, that we could, probably, design something as long as stakeholders work together.
So I want to know if you have thoughts about that, about that challenge?
>> I certainly think it is a which I can't speak about how trials get organized, in the U.S.A.. But something that I would throw over to the IOM, to possibly to take forward.
I do think that it should -- I think such a trial should be multi-specialty, multi-disciplinary as well.
Not just involving medical clinicians, but people coming from other backgrounds as well.And also,looking to support patients. From the point of view of the other affects on their lives as well.
So that was a suggestion for what it is worth from me.
>> Yeah, I think, just to close on that. If you follow people over time,and more perspective, is find out who had a different diagnosis, and also people that get told they have fibromyalgia or multiple sclerosis, it would be worth looking to see if any of them Lyme in the end.
Often they have a different diagnosis. That would be a pathosis to add in as a possibility.
So all kind of things.
Patients are concerned that those are not included in the study.
Those that are told they have a different diagnosis.
So lots of creative ideas that patients may bring to the table. That could be included.
I just want to give a thought about design issues.
>> Well that was the reason I said, if a patient is actually is found not to have Lyme Disease, but is given a diagnosis of something else. Rather than exclude them, from the follow-up.
>> I like that thought.
>> Actually, keep them within the cohort. So we can see what the long-term outcomes are.
>> The treatment.
>> For all the group.
>> I agree.
>> On that topic, I understand that,NIH, has funded a committee to look into some of those other diseases. Such as chronic fatigue syndrome, and,perhaps, we ought to have a committee on Lyme and tick-borne diseases that would work in conjunction with them, to exchange data and information, and cause many of the symptoms as I understand manifested by the patients are cross -- whatever you call it as doctors. Cross indicative
>> I am sure there would be a really great benefit from that type of a approach.
Because, a lot of the time we could be looking at final common pathways, as well.
And with these conditions.
>> So Dr. Gerber glumpy and you are next.
>> Very quick follow-up question for you Dr. O'Connell.
It is wonderful that you come from an environment that doesn't have to worry about a number of things that we have to worry about in the states.
Who would constitute your ideal clinical management team,for this set of diseases?
>> You don't have to mention rehabilitation. Okay. I mean, that's my specialty. This is not self serving. I really want to hear what you have to say.
>> Well, Lyme Disease, affects so many systems, we actually need to bring in a number of different specialists.
You know, for example, in the UK,neuro briloses would be the major complication to deal with.
And, in fact, rheumatologists in the UK do not tend to see many cases of Lyme arthritis at all. It is not a major feature of Lyme in the UK or most of Europe N what we are looking at here is different.
Strain variations, as much as anything else.
Butba Borrelia Burgdorferi sends you to your home strain, is actually less common than either the other branches are concerned.
So we see less of the manifestations.
So, I mean, I think,we need to bring in yet certainly all the major specialties that would normally be involved in dealing with the complications that patients with Lyme can have.
I have been tremendously impressed as well by some of the information that Hassett put out yesterday from the point of view of central pain.
I mean, we have to find ways of managing these symptoms.
And helping patients to get back to --to get their lives back.That's actually what we are talking about. Rehabilitation can be very major part of that situation.
>> Multi-disciplinary. And multi-special teal teas well
>> It was a very pointed question,that I presented to you.
Because in these repositors, the question is what additional information will enable us, in your view, to understand the natural history, as well as what are our effective clinical interventions that enable people to be restored.
And so what I am asking is coming from your perspective, management of chronic illness, in a different system, would the contributors, in your view, to these bio repastor res include those things that are much more clinical science driven.
You mentioned the central pain, central fatigue, that sort of stuff.
That's the purpose of my question. I think you have answered T I have an idea of what you have in mine. I appreciate it.