I realized in reviewing all the comments I've seen to date that some people are thinking along similar lines as I am. But anyway, here's my proposal:
I would like to see the IDSA publish a paper which characterizes all the data on those patients who have stated they have been diagnosed with chronic Lyme disease and/or Post-Lyme Disease Syndrome. What are the similarities both in terms of empirical testing (not just ELISA C6 and WB, but immunological as well), history, presence of coinfections, genetic profiles, preexisting conditions, and symptom presentation in this patient group? It'd be good to see aggregation and see if there are specific subgroups of all these patients - rather than just see and know about patients who met CDC surveillance criteria who could participate in clinical trials. Those who are living with CLD/PLDS may not be those who end up participating in clinical trials. Let's see a characterization of the data first, much like what the Norwegians did this past summer in an NIH study, "The Phenomenon of "Chronic Lyme"; an Observational Study"(of which I am still waiting for the results).
I would like to see the IDSA publish a detailed web site which explains their own hypothesis or hypotheses for autoimmunity giving rise to persisting symptoms after antibiotic treatment for Lyme disease. There is little detailed information available online all in one place on how autoimmunity hypotheses came to be adopted after persisting infection models were considered - even though there are plenty of research papers where the purpose was to determine any autoimmune factors in infection. The information is not laid out in one logical coherent piece displaying all the building blocks of findings for others to see. If the IDSA thinks they have a strong argument in favor of autoimmunity and many people fail to agree with it, it seems to me they have failed to support it.
I would like to see the IDSA also include on that web site what the evidence is for persistent infection after antibiotic treatment, and a detailed explanation on why they think an infection cannot persist beyond 2-3 weeks of antibiotic treatment in any patient, and a list of criteria which would need to be met in order to determine that Borrelia does and can persist in its host. (Something specific about #2 on this page, and more detailed.)
I would like to see an extension of the proteomics research which distinguished the CSF proteins of Chronic Lyme Disease/Post-Lyme patients from the CSF proteins of CFS/ME patients. In particular, see a comparison between acute Lyme disease, late stage Lyme disease, and chronic Lyme disease protein distributions. Are they the same? Are they different? Can we use this knowledge to learn more about disease progression?
I would like to see some more research done on how different genospecies of Borrelia register on different serological tests for Lyme disease. It might not even be fair to continue using tests for "Lyme disease" - what might be a more accurate test panel would be one for Borreliosis, which covers all Borrelia including relapsing fever Borrelia and forms of Borrelia which do not always present with the tell-tale EM rash (hardly tell-tale under those circumstances). I'd also like to see related research on how repeat panel testing catches more disseminated infection which was not caught earlier. (The issue here being that early suspicion of disease must be present - ethically if you suspect and do not treat, this creates problems when one is found serologically positive.)
I would like to see some more research done on how different antibiotics affect different kinds of Borrelia. The fact that some patients do experience treatment failure even in early Lyme disease - up to 10% of all acute patients - may be due to the efficacy of their initial treatment. Refer to this:
"In Vitro Susceptibility Testing of Four Antibiotics against Borrelia burgdorferi: a Comparison of Results for the Three Genospecies Borrelia afzelii, Borrelia garinii, and Borrelia burgdorferi Sensu Stricto."Most of all, I would like to see the IDSA have a heart, and for dismissive opinions such as "In many patients, posttreatment symptoms appear to be more related to the aches and pains of daily living rather than to either Lyme disease or a tickborne coinfection," to not be included in official professional medical guidelines for the treatment of Lyme disease. Any opinion such as this must be rigorously backed by fact and not by comparison to the population at large. Any condition which involves pain as a symptom could be compared to pain in the population at large. This should not distract one from the fact that certain medical conditions involve pain as a symptom. The controversy in Lyme disease may not end any time soon, but if patients were taken at their word for describing the serious limitations and degree of pain that they experience on a daily basis, that would go a long way towards a first step at healing the anger so many of us have.
"In 7 out of 12 comparative evaluations (P > 0.05), MBCs were significantly different among the three genospecies. B. garinii seemed to be especially susceptible to azithromycin, while amoxicillin had a significantly greater effect on B. burgdorferi sensu stricto compared to the other genospecies. Ceftriaxone had the lowest MBC with B. afzelii and increasingly higher MBCs with B. garinii and B. burgdorferi sensu stricto. Doxycycline did not show any remarkable differences in its effects on the three genospecies."
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Well said. Time to start compiling what we have instead of just saying we can't have. The middle ground would at least be a starting point. Perhaps you should e mail IDSA direct as you don't use Facebook although not convinced anyone at IDSA will listen.
ReplyDeleteJoanne,
ReplyDeleteThanks, I have looked Facebook in the past - otherwise I couldn't have made an entry about how difficult it is to find specific Lyme disease related groups on Facebook. I just haven't gotten into the habit of using it. (Perhaps because at the time of writing that entry, I found it difficult at the time to find science-focused pages on Lyme disease and easy to find tons of social and support pages - something of which the internet already has many pages.)
The middle ground would at least be a starting point. And I guess that is what this blog has tried to aim for all along, so it shouldn't be a surprise. I realize, though, now looking back on my list that it really is more of a list for the scientific research community as a whole more than it is a list for the IDSA.
A more IDSA-specific list would probably be about suggesting that they become more user-friendly as a whole and more approachable. If it's true they deleted people's comments on Facebook, that should stop. If it's true they haven't directly answered some people's questions and concerns, they should begin answering. Even if the IDSA guidelines panel disagrees with the chronic infection model of Lyme disease, it does fall to them to provide evidence that supports their own model or models for what causes persistent symptoms and actually DO something to help patients manage and improve their symptoms. They have failed to do so, and in a number of exchanges have lacked compassion for patients. This has been a major complaint by many - not only patients but doctors, caretakers, family and friends of patients.
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ReplyDeleteIf in their opinion there only is Post-Lyme Disease Syndrome, then that in itself should be getting more research as to a cause and cure. I don't think that this would necessarily be a bad thing. After dealing with Lyme disease myself for several years and reading and talking to other patients about their own observations, I think there probably are two conditions involved in patients' symptoms. I think that infection can persist for longer than 2-3 weeks in some patients - but I also think that infection can leave some patients with damage that may take years to recover from.
We need research that makes it easier to make that distinction between those two groups. We also need more research on persistent infection in itself - to look at the mRNA in the spirochetes in Barthold's post-treatment mice and see if those spirochetes are viable and infectious. Are those spirochetes slowly dividing, dormant, or completely dead as a doornail? In mice? In humans? I think with repeated well-designed experiments, we would have our answer and could move on.
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ReplyDeleteHistorically, though, there is a big hill to climb. The IDSA guidelines group would have to dramatically alter course and commit to being present to patients in a way they haven't been, and even if they did change course, would patients trust them to be there for them? What would that even look like after the situation has been strained for so long? When there has been a history of a lack of faith and trust because of how the IDSA has handled a number of things?
For example, their Lyme antiscience/antiadvocacy rant in the Lancet last year which offended many Lyme disease patients (including me), the Blumenthal guidelines review and how that was handled, dismissive and judgmental statements made about Lyme disease patients by specific researchers (unprofessional, in my opinion), and failures to be inclusive of and acknowledge patient concerns on a number of occasions (including scientific conferences on tickborne illness).
There has been a lot of erosion of trust. A LOT has happened since those early days when Polly Murray was working with Dr. Steere to figure out what was happening in Lyme, Connecticut in the 1970's.
So there is a pretty high hill to climb. Instead of climbing it, though, if what has been said is true and they were deleting comments on Facebook which were not in violation of the terms of service, the hill has just gotten a little higher. It's a setback if they can't even attempt to do public outreach and respond to those who comment without malice.
If the IDSA ever wants to change their relationship with patients, it will have to be in baby steps, perhaps, and it will have to be viewed by others as genuine.
I don't see them suddenly changing position 180 degrees and embracing all that the Lyme disease patient community desires and giving it to them... I would not expect them to change their guidelines overnight - as many people have wanted them to. I don't think that's a change anyone can expect them to make now.
What they could reasonably respond to is a request for more research and to be more approachable about what their position actually is and why - rather than to maintain the seemingly awkward response that their position is based on "expert opinion".
From there, though, if they decide to listen to patients, they have to accept that the initial outpouring from patients to them is going to be more anger and upset. It can't be any other way because strained relations have been going on for so long. But I think that if the IDSA wants to change course, it's going to have to hear that anger and upset and listen to it, not be dismissive of it, and respond to it in a genuinely compassionate way. And the IDSA will have to admit that they erred in how they have handled patient concerns.
I don't think patients will be best buds with the IDSA if this happens. It'd be more along the lines of it being like breaking the ice at the United Nations when two countries have had a long held dispute - trying to find a way to have a civil and productive discussion around moments of tension and raised emotions.
I can't help wondering if The IDSA could easily use the statistics from their Facebook experiment as a staring point. Some very frightening things going on. How many posts per minute? A LOT. Which countries/states? A LOT. Average posts per day? X month X year = A LOT. Hundreds of thousands?
ReplyDeleteMeasurements/programs like that are in place. Why not use them? If the FB was designed to create stats on all users then certainly it has created some truly interesting-if not record breaking information on the Lyme community. Even if you filter out the piffle what does all the chatter say?
A whole lot of disgruntled badly treated broke dying people out there? Ouch. -Jess
I have some very simple requests for IDSA 1. To listen to what IOM Workshop report said ie There are significant gaps in what we know about Lyme and tick borne diseases (that shouldn't take too big a leap of understanding. 2. listen to the patients and let doctors work with their patients to find what helps them whether that be antibiotics if they seem to be helping or palliative treatment which should be given whatever the controversy is about our symptoms still need managing and that is not happening for many patients.
ReplyDeleteSadly I believe IDSA have alternative agendas and helping sick patients does not seem to be one of them.
Jess,
ReplyDeleteI would hope that even if they are deleting comments so they can't be seen on Facebook that they are saving them somewhere and considering the content. I've noted that others have stated that not all the comments have been deleted - some have, some haven't. I hope someone is keeping track of which ones are removed and their content to figure out why they may have been removed.
That said, you're right: It's data. They could learn something from this if they wanted to and apply what they learn to helping patients.
Joanne,
Those are very good requests. I agree. I particularly think that the IOM workshop report from 2010 should be acknowledged by the IDSA guidelines group and by doctors and researchers worldwide. Knowing the unknowns is important - as important as acknowledging what we do know.
I think item #2 is going to be harder one for the IDSA to agree with. There has long been a divide between LLMDs or more specifically ILADS and the IDSA. (The odd notable thing here being there are some LLMDs who ARE members of the IDSA, but many people tend to overlook this.) But there is a divide there, which I think came out of the approach of the academic research doctor versus the doctor who is in the trenches up to their arms in blood, so to speak.
Part of the problem has been complicated with the fact that while some LLMDs came to the field from an infectious disease/pathology background, as time went on, a broader field of doctors became LLMDs from different backgrounds (not just areas of specialization, but in terms of general experience and research credit) and they became suspect for doing longer term treatments and not enough empirical research.
But that's just it: Most doctors are not in the business of doing research. Their job is to focus on treating patients. Only a small fraction of doctors do research, and they are usually academic physicians for whom caring for patients is often related directly to overseeing clinical trials and studies.
It's tricky. I agree with you that doctors should be given more latitude to treat patients so that they have a better quality of life, provided the treatment is proven safe and monitoring it continues. Regardless of which treatment is chosen, research needs to continue to find the best approach - it's this part I think the IDSA has fallen down on. They're more focused on what caused the bleeding than the bleeding itself.
After years of watching what has gone on between the Lyme disease patient community, ILADS, and the IDSA, what's happened often seems unbelievable to me. I can't believe the IDSA hasn't done more to help people.
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