Friday, April 27, 2012

6 Health Matters Magazine And Lancet Anti-Science Lyme Disease Rebuttals

I wanted to point out two noteworthy online venues which are discussing Lyme disease as well as chronic Lyme disease - one article and a series of rebuttal letters which have been circulating around the Lyme disease patient community recently.

The first venue is Health Matters, an online magazine in the UK which is edited by Steve Iliffe, a professor at the University College of London, and Paul Walker,  an independent health consultant who worked for the NHS for many years.

This month, Health Matters published part one of an article by Kate Bloor on Lyme disease, "Falling Through The Gap?: Part One: Lyme Disease Prevention In The UK."

The article does not focus on the controversy around chronic Lyme disease but instead goes straight to the roots of Lyme disease by asking about which agencies and institutions in the UK are responsible for educating the public on prevention of tickborne illnesses and how well this job has been done to date.

Quoting Kate:
"Approaches that only target those in traditional high risk groups, may not reach far enough. New research shows that one in five people diagnosed with Lyme became infected either in an allotment, park or garden and one in five patients was infected abroad. These are not normally considered high risk areas or high risk activities."
Any program for prevention should be designed to reach all those groups who are found to be at risk and not some fraction of them, and should include prevention where substantial minority groups are at risk.

Kate also included this useful bit of statistical information:
"A survey of GP’s showed that 72% reported using the wrong method of tick removal, of the surveyed councils, only 7% provided information to staff, and only 7% claimed to have information for the public on their website."
From the research I've read from Russia, one of the major causes of infection from tick bites stems from improper removal of the tick. Every effort should be made to carefully remove the entire tick including the head and mandibles, without placing pressure on the tick's abdomen/gut. This will lessen the odds of contracting an infection greatly. Here, citing that 72% of doctors removed ticks incorrectly is very concerning; doctors are the front line for treatment and should be removing ticks properly nearly 100% of the time.

That regional councils would not have their own staff education and education for the public in place is also important to note, and I have to wonder how much those who have been bitten by ticks in these areas have informed the councils on their experience and requested more warnings to the public on tickborne illnesses. To me, it seems like it would require a small amount of effort and money invested in education to help prevent more people from being bitten.

The rest of the article outlines how prevention is being managed (or not) by various organizations, the educational strides being made by patient advocacy organizations such as Borreliosis and Associated Diseases Awareness UK (BADA-UK), and the need for national and local government health agencies to make tickborne illness a priority.

More here, at the link: http://www.healthmatters.org.uk/?p=1203



The second venue I want to mention is The Lancet, which has recently published a series of rebuttal letters in response to an opinion piece posted last year, "Antiscience and ethical concerns associated with advocacy of Lyme disease" (abstract only).


  • Stella Huyshe-Shires, chairperson of Lyme Disease Action, writes about how the situation Auwaerter and his coauthors outline in the US is different from that which is experienced in the UK in regards to Lyme disease prevention, education, and treatment. She focuses on patient advocacy group's drive for awareness and evidence-based medicine to treat patients, and she mentions that the British Infection Association is now collaborating with LDA (UK) and a Department of Health funded body, the James Lind Alliance, on documentation of the uncertainties in treatment and diagnosis of Lyme disease.

  • Christian Perronne, of the Infectious Diseases Department of the University of Versailles-St Quentin, France, points out the high variability and sensitivity of serological tests for Lyme disease, how tests do not account for strain varieties, and that other microbial infections may mimic that of Lyme disease. He points out that syndromes of an unknown cause should no longer be referred to as being chronic Lyme disease, and should be investigated for other microbial and non-microbial causes using an open-minded scientific approach.

  • Carl Tuttle, of Hudson, New Hampshire, USA, wrote about how his experience of Lyme disease did not seem to match that of Auwaerter's experience, given how many people he knows have suffered serious symptoms with Lyme disease that was not diagnosed early - whereas Auwaerter indicated Lyme disease is easily diagnosed and treated. He mentions the inadequacy of serological testing and how it can lead to late stage cases which went undiagnosed and untreated, and how legislation has been passed in several states which protect doctors who treat Lyme disease patients with long-term antibiotics. He asks if the IDSA is correct in its position, then why is there so much legislation being passed which protects doctors who offer long-term antibiotic treatment?

  • And lastly, Auwaerter et al offers a response to these rebuttals here:
    http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(12)70056-7/fulltext.

    Auwaerter et al state that a huge percentage of patients are being improperly diagnosed with chronic Lyme disease by alternative practitioners when these patients have another condition. They point out that serological testing is reliable, and evidence that testing is unreliable would be needed by Mr. Perronne and Mr. Tuttle in order to support their position. Auwaerter et al point out that the current guidelines stand based on independent scientific review and that "Vague symptoms such as chronic pain, fatigue, and neurocognitive complaints are poorly understood by modern medicine but are the focus of this debate." (Ed: The last full paragraph of this response is as long as the previous two put together and is comprised of nothing but a list of stated possible conflicts of interest.)


Comments:

While I agree with a lot of what Ms. Huyshe-Shires had to say, I would like to step away from the argument that "Lyme disease in ______ is different because it's different here".

I've heard this before, and this argument has been made to try to distance European patients from those in the US, with an underlying belief that since European strains are different, that diagnosis and treatment should be determined using European scientists and research - not that of American based IDSA. Fine, but then I will argue that since Europeans also contract Borrelia burgdorferi that they should come up with diagnostic and treatment methods for the US as well!

Scientific research to date has shown that Borreliosis is Borreliosis, whether it is caused by Borrelia burgdorferi, Borrelia afzelii, Borrelia garinii, and a number of other strains. The symptoms produced by these organisms may differ somewhat from one locale to the next, but many have the potential to cause neuroborreliosis, and indeed, even those with a most conservative view of the Lyme disease controversy have stated that there has been too much emphasis on Europe having more neuroborreliosis and different symptoms when the situation is that clinical presentations in the US have been very similar to those in the UK

Receiving an early diagnosis and treatment matters regardless of where one is in the world and which strain they have.

I can relate to Mr. Perronne's position, to some degree. I don't think this is a heterogeneous condition - nor was it from the start even if just basing it on those who have had tick bites - since a number of ticks are coinfected with pathogens other than Borrelia burgdorferi/afzelii/garinii. I think it's possible some patients have a different infection which they contracted through a tick bite or perhaps even a tick bite made them more susceptible to a new, undefined infection. More research is needed to determine why this group is heterogeneous, and to study those with a definite history of a tick bite and persisting symptoms very closely (regardless of serological test results) as their own separate group.

Mr. Tuttle's remarks reflect the fact that regardless of what side of the Lyme disease controversy you stand on, people are suffering a lot and heated debates on the state level end up weighing in on the side of the patient. Access to extended treatment is winning - whether the IDSA approves or not.

Auwaerter et al's response, to me, is predictable and to be expected. It would be appreciated if one day they were to focus more on the content of Mr. Perronne's position and join him in it by finding a way to initiate research which directly helps patients who are suffering with persisting symptoms and to stop spending an inordinate amount of time focusing on whether or not certain doctors and patients promote pseudoscientific practices and beliefs. They've already made it quite clear to The Lancet and the public what their position is.

One has to face reality here: If some alternative to current treatment practices is discovered which is safe and effective, patients will use it. In the meantime, patients who are suffering greatly will try any of a number of drugs, antibiotics, herbs, and supplements which are available in order to get well regardless of the IDSA's position on their condition and its treatment.

Whether these attempts to relieve symptoms are scientifically backed or not is irrelevant to someone who is seeking relieve pain and is nearly (if not completely) on the verge of suicide with pain. It is this human element of suffering which Auwaerter et al do not seem to want to contend with and address in a compassionate way - nor in a clinical, scientific way by either engaging in research which directly resolves the controversy or by finding the treatment of all treatments based on their own hypothesis of what causes persisting symptoms.

Patients with persisting post treatment Lyme disease symptoms have often tried mainstream approaches to treating their conditions when they were diagnosed with something other than chronic Lyme disease - only to either experience no improvement or even experience a significant worsening of their condition. The use of steroid-based drugs used for treating rheumatic conditions has been one such example of where patients with chronic Lyme disease have tried them based on an apparent diagnosis of a rheumatic condition - only to get sicker and become more symptomatic. Why is that? Someone needs to research this, too.

At some point I need to write a detailed scientifically cited response to Auwaerter et al's original letter to the Lancet instead of the rant I wrote in response to the abstract alone last year. At the time, I was too personally offended that I and my condition were equated with pseudoscience and my offense led to ranting rather than a rational, objective calling out of each point in the full text with a substantiated counterpoint of my own. 

It's difficult to be without bias. As a person suffering with the fallout from Lyme disease and Babesiosis, I cannot be completely without bias no matter how hard I try. But I can try to read the scientific arguments and research that different parties put forward and weigh them independently of how rotten I feel. It is possible, even if at times difficult. 

In the end, I genuinely want someone to just figure out what has brought me to the level of suffering I've experienced over the past several years - even if in some of that figuring out the cause turns out to differ from that which I've suspected. Fine. Just find it, and find a treatment that gets me back to my old self. 


6 comments:

  1. Camp I don't think we experience the 'Lyme Wars' quite to the same extent here in UK - as far as most doctors are aware Lyme doesn't exist- period end of debate, the few who recognise it just follow what HPA says except for a growing minority who have been influenced by their patients and seen the marked improvements on antibiotics.
    So we haven't got to the 'war' stage yet and hopefully we won't, LDA seem to be trying very hard to educate through good scientific papers rather than the he said she said approach and kudos to them that their website is accredited by the Information Standards Scheme a Dept of Health Initiative.
    Interestingly it was the IDSA review report that made a point of European research not being relevant to US because of the different strains and presentations - hence one can properly argue for proper research to be done here in UK /Europe that relates to our experience - the IDSA guidelines are not relevant here ( nor anywhere else).
    Good luck to any country that manages to break the stranglehold this small bunch of doctors have on diagnosis and treatment of Lyme Disease - once broken it will rapidly fall apart in all other countries.

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  2. Hi Joanne,

    Saw that you recently also posted about The Lancet rebuttal letters on your site. I am pleased The Lancet gave others a chance to respond to the initial letter Auwaerter et al published and that others could see another perspective on chronic Lyme disease.

    I hope that you don't experience more serious "Lyme Wars" in the UK. It has seemed to me that the problem in the UK is stuck at even the most basic level: Acknowledgement that the acute form of Lyme disease is present throughout the UK and people are at risk for it - plus diagnosing an obvious EM rash. That is pretty basic, and something that I would think even the IDSA shouldn't argue against; if an EM rash is there, it's there - treat the person.

    Chronic Lyme disease and the controversy over its existence and whether or not it is a persistent infection or autoimmune condition is an entirely different issue. One that is messier by far than substantiating the existence of acute Lyme disease, which should be a no-brainer for anyone.

    I am pleased with the efforts of various organizations such as BADA and LDA in the UK (LDA = Lyme Disease Action here, not to confuse our North American readers who may think I am mentioning the Lyme Disease Association) in trying to educate the public there about Lyme disease and like that they are working from an evidence-based approach to show what is happening and the research that is available. I'm hoping that working with James Lind Alliance will be productive for everyone.

    That accreditation from the Information Standards Scheme is meaningful and I wish that here in the US we had something equivalent. Perhaps we do, and I've missed it somehow?

    I find it interesting that the IDSA points out that European research is not relevant to the US because of different strains when Borrelia burgdorferi s.s. is causing Lyme disease in Europe - one could at least concede that studies from Europe which include Bb ss could apply to those infected by Bb ss in the US as well. With bird migration, it's possible some in the US may contract B. garinii and B. valaisiana or strains very closely related to them - though how common a scenario that is or would be in the future remains to be seen.

    See related papers:

    Detection of Lyme disease spirochete, Borrelia burgdorferi sensu lato, including three novel genotypes in ticks (Acari: Ixodidae) collected from songbirds (Passeriformes) across Canada
    http://onlinelibrary.wiley.com/doi/10.1111/j.1948-7134.2010.00068.x/full
    Lyme Borreliosis in Canada: Biological Diversity and Diagnostic Complexity from an Entomological Perspective
    http://www.bioone.org/doi/full/10.4039/n08-CPA04

    (I could probably scare up more papers, but check out the second one in general and not just because of the mention of birds as competent reservoir hosts or because some seabirds carrying B. garinii were found in Newfoundland - it is a paper full of many Lyme disease related issues.)

    (more in another comment)

    ReplyDelete
  3. Anyway, your statement that the IDSA guidelines are not only not relevant in the UK but are also not relevant anywhere else is what I was suggesting. I think they are probably okay for many acute cases if the guidelines as stated are actually followed for Lyme disease treatment and someone is treated early enough. But then there is still that concerning 10% of acute cases who have had treatment failures - this being mentioned by the IDSA themselves, and not a statistic derived from patients, advocacy groups, or something I made up on a dull Sunday afternoon. The IDSA itself has documented these very early treatment failures, so perhaps it's good to question the utility of acute treatment to some degree as well.

    I think it's clear from existing research that not enough is known about the optimal treatment response curve for people who have coinfections and for people with late stage Lyme disease who were either undertreated early on or were significantly delayed in first receiving treatment. I don't think the guidelines adequately address patients in these situations.

    The one thing I look to Europe for with a certain amount of hope and intellectual curiosity is if those countries who are already in the process of questioning the IDSA's guidelines conduct their own independent research that provides those of us in the US with evidence that is needed which helps resolve current controversies. It is high past time this is done. If the studies needed for resolution are neither conducted by the NIH nor through private funding here, then maybe someone in Europe can do it.

    ReplyDelete
  4. Camp I believe there are increasing number of doctors around the World questioning the IDSA's guideline approach and I sense there is a shift towards longer treatments. It may only be isolated pockets at present but it is happening. Now that SOC has gone it will be interesting to see how Porton Down move forward.
    There is still interest at government level with a growing number of MP's getting involved.
    As to LDA and James Lind Alliance -I have a letter from Dept of Health that says they are working with The James Lind Alliance and LDA on this matter. LOL! I will believe it when I see it.

    I had written complaining about the involvement of SOC over the Anti science article- not exactly a scientific paper in my view more an opinionated piece D of H replied singing SOC's praises so I just sent a transcript of her presentation at IOM workshop and highlighted all the questions she raised ie . better testing, working with advocacy groups, working with patients to find out what was causing problems and what treatments would help etc. she did actually say many of the things we have been asking for years- of course the reply I got was mainly the usual stuff evade and avoid the question and dismiss with yet another IDSA paper supporting themselves, but they did say about working with James Lind and LDA- and that British Infectious Association were involved - yes they are but BIA have been listening to LDA's concerns so one can't just assume they will rubber stamp everything SOC et al has said.
    Perhaps one day when I have nothing to do I might post all the letters D of H and HPA have sent me- it makes for interesting reading and they do trip themselves up several times - whoever writes for them must follow a script with little real understanding of what they are writing and absolutely incapable of any lateral thinking - or thinking even - as an ex Civil Servant who on occasions was involved with writing replies to ministers I was shocked at the poor quality of correspondence and lack of supportive scientific papers that were produced. But then it seems some people get away with murder - and you can take that literally or metaphorically.

    ReplyDelete
  5. Falling through the Gaps Part two from Kate Bloor
    http://www.healthmatters.org.uk/?p=1232

    ReplyDelete
  6. Joanne,

    Thank you for the update on Ms. Bloor's article. I read it, and I'm disappointed to read a passage such as this one:

    "Almost nothing is known about health professionals and doctors’ knowledge in the UK and Europe. There is no published research in this area to date for Europe, and only one article (Wendy Fox (2011). Under the Radar: Lyme Borreliosis in the UK. Science, 68(4), 10-11. Parliamentary paper) which shows poor levels of knowledge of tick removal in GPs.

    As mentioned, 70% of people affected by Lyme disease, felt their GP’s were not informed about infections from ticks, when they became ill. This dimension appears to have been neglected in research and adds to the problems around how best to prevent actual illness from Lyme disease and other tick-borne infections."


    Knowing how to properly remove ticks is very important in preventing infection. That so many doctors lack knowledge about tickborne infections is astonishing when these infections are becoming a growing problem throughout the UK - not to mention picked up while away on vacation in the US or somewhere like Germany or Holland. Doctors really need to be aware of these infections in order to treat patients thoroughly early on and help avoid the risk of long term chronic symptoms.

    ReplyDelete

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