John Scott and helminthic therapy

    From Helminthic Therapy wiki

    John Scott is a retired special school head teacher from the UK, who is, himself, on the autism spectrum. His Asperger’s syndrome has played a large part in shaping his contribution to the helminthic therapy community and movement.

    A life saved by worms

    Scott had issues with his health from infancy. He had asthma, allergies and gastrointestinal symptoms during childhood, with the latter requiring hospitalisation when he was four years old. All but the allergies resolved during his early teens, and he remained relatively healthy throughout his twenties. Then, in his thirties, he developed a severe hyper-sensitivity to food, along with Crohn’s disease, myalgic encephalomyelitis (M.E.), multiple chemical sensitivity (MCS) and restless legs syndrome.

    The food intolerance worsened relentlessly over a number of years until Scott was unable to tolerate any normal food whatsoever and was forced to live on powdered semi-elemental infant foods, which eventually also began to cause reactions. In 2007, just when this situation was looking bleak, he heard about a clinical trial that was investigating the safety of using hookworms as a treatment for Crohn’s disease, and he promptly signed up. [1]

    Most of the doctors whom Scott had consulted had insisted that his reactions to food were psychosomatic, even though he had voluntarily submitted himself for a psychiatric evaluation which had categorically ruled out this possibility. [2] These physicians had also dismissed Scott’s suggestion that his problem with food could be immune-related, so he hoped that the hookworm trial might provide more objective guidance on this possibility.

    Just before the end of the twelve week trial, Scott found that he began to regain a degree of tolerance to a couple of foods, so asked if he could keep his hookworms a little longer. The researchers agreed and, during the next few weeks, it became very clear that hosting hookworms could be the solution to his hypersensitivity to food, and he began to journal his path back to health. His detailed account of this experience can be found on the following page.

    Before becoming involved in helminthic therapy, Scott was providing support for people with allergies by acting as a telephone contact for Allergy UK. He was also writing articles about allergy-related matters, and reviewing allergy research for the Foods Matter magazine and, later, the Foods Matter website.

    For several years, Scott also maintained a microbiome science digest on Facebook (Gut Buddies) where he shared details of new microbiome research that might have implications for health. However, in 2018, when his involvement with the helminthic therapy movement was demanding most of his time, he passed this project to a friend.

    Creating community stability

    At the time Scott first entered the helminthic therapy space, the only community for helminthic therapy self-treaters was the Yahoo Helminthic Therapy forum started by Jasper Lawrence, a co-founder of Autoimmune Therapies (AIT). The other early helminth providers, Ovamed (forerunner of Tanawisa) and Worm Therapy, have never created online groups.

    After his involvement in the clinical trial at Nottingham, Scott had obtained his next few doses of hookworms from AIT and, in June 2010, was invited to help this company's staff with the moderation of the Yahoo forum. He continued in this role until Lawrence lost interest in the group in 2011 and indicated that he was considering deleting it. Unwilling to allow the group’s demise, Scott assumed ownership of it and continued to manage it until Yahoo closed down their groups operation in 2020.

    The first few years of Scott’s involvement were a difficult period for the burgeoning helminthic therapy community, starting with a breakdown in the relationship between Lawrence and a member of the community with whom he had struck a commercial deal. This individual, who was operating under an alias, had formed several new groups, both on Yahoo and Facebook, to facilitate his plan to monetise the therapy, and, following his split from Lawrence, he used these groups to mount a very unpleasant campaign of disparagement against Lawrence. (For more about this individual, his groups and activities, see the History of the helminthic therapy groups and Herbert Smith and helminthic therapy.)

    Smith was supported by several others who had grievances with Lawrence, all of whom were, by then, clients of the only other hookworm vendor operating at that time, Garin Aglietti, founder of Worm Therapy. Their vigorous promotion of Aglietti and Worm Therapy, combined with Smith's relentless attacks on Lawrence and AIT, inevitably upset those members of Smith's groups who were AIT clients.

    At this point, Scott was unaware of the deal between Smith and Lawrence, and how this had broken down, and, since he was unable to understand why Lawrence was being attacked so vigorously, he tried to defend this provider with whom he had worked closely on the Yahoo forum. This led to Scott also becoming a target for Smith.

    When Scott saw how this “provider war” was dominating the community, he determined to find a way to bring it to an end and re-focus attention on the therapy itself and on the remarkable results being obtained by those who were using it. Unfortunately, there was seemingly no end to Smith’s need to express his obsessive animosity towards Lawrence, and, recognising this, along with the fact that Facebook had become the preferred platform for the majority of helminthophiles, Scott created the Facebook Helminthic Therapy Support Group in March 2012, initially with a provider-agnostic policy.

    The Support group was the first truly independent group run by, and for, the entire helminthic therapy community, including not only clients of Worm Therapy and AIT, but also of Ovamed, the supplier of TSO, which would eventually be replaced by Tanawisa. It was a venue where everyone interested in helminthic therapy could meet and interact in an atmosphere free from the influence and manipulation of those with commercial interests or personal agendas.

    In June 2015, when it became clear that there was a need for a separate Facebook group for self-treaters who were growing their own helminths, Scott created the Helminth Incubation group on Facebook. Then, in late 2020, in response to reluctance on the part of a few community members to use Facebook, he created a satellite group on MeWe, followed, in 2021, by new group on Reddit to replace an earlier, derelict one that the platform had archived.

    Establishing an information database

    While moderating the Yahoo Helminthic Therapy forum in its early years, Scott became concerned by the way that he had to keep repeating the same basic facts in response to members’ questions, and also by the numerous ideas about helminthic therapy that were being repeated as fact when there was little or no evidence to support them. For example, one unsupported idea that persisted at that time was that anyone with Crohn’s disease would only benefit from hosting helminths for a very limited period before the disease would return in full force. Another notion was that the hookworms that were available from the providers would quickly lose efficacy due of inbreeding.

    Both these ideas were eventually shown to be groundless but, with no body of information to which self-treaters could turn for clarity about such issues, these notions were regularly revisited, and, at that time, never satisfactorily resolved. So Scott had begun gathering relevant data from the available science, as well as collecting details from online reports by self-treaters, and organising these into documents made available initially in the Yahoo forum’s files section. Eventually, they were moved to the files section of the Helminthic Therapy Support group on Facebook.

    While these files gradually became the go-to source for information about helminthic therapy, there were many issues with the functionality of the files section in Facebook groups, not least the sparsity of editing tools and the lack of a search function. But the final straw was the introduction of censorship by Facebook, which prevented some details that were important to those using the therapy from being shared in the group’s documents. Scott realised that what was needed was a dedicated helminthic therapy website that was beyond the control of the tech giants, and not connected with any commercial entity, including the helminth providers.

    There was already an “Open Source Helminth Therapy” (OSHT) website that had been created by an early adopter of the therapy - an artist and Crohn’s disease sufferer named Paul Badger. Scott had become an editor on this site, and had been adding material and periodically updating details about the helminthic therapy groups that he managed. However, the site had been taken over by Herbert Smith, who eventually blocked Scott’s access to it.

    With Smith preventing Scott and others from contributing to the OSHT site from 2014 onwards, and with Smith not making any further additions to the site himself, Scott contacted Badger in the hope of being able to use this site as the permanent home for the documents he had produced. Unfortunately, Badger deferred to Smith, who continued to block Scott's access.

    While Scott was considering other options, Facebook unwittingly intervened when they deleted Smith’s account after discovering that his identity was a fake. This action effectively banished Smith from the helminthic therapy community, which was, by then, operating almost entirely on Facebook. When Scott contacted Badger following this event, he was finally given access to the OSHT site, and was eventually able to negotiate the transfer of ownership from Badger to himself.

    Unfortunately, the OSHT site’s software was badly out of date as a result of several years of neglect by Smith, and insurmountable technical issues were encountered in trying to update the site. It was therefore decided to take this site offline and create a new one. The resulting Helminthic Therapy wiki entered service in January 2017 and, once all the extensive material from the Support group’s files had been transferred to the site, this quickly became established as the definitive source of information about helminthic therapy.

    Curation, advocacy and networking

    Scott's contribution to the helminthic therapy community has been characterised by an ability to recognise what needed to be done to meet the needs of its members and to make information about the therapy available to the wider public. Having identified what was required, Scott then applied patience and determination in finding ways to overcome the obstacles that presented themselves as he set about doing what he believed was necessary.

    Having realised his vision of a comprehensive, science- and crowd-sourced helminthic therapy database, administered by independent volunteer members of the helminthic therapy community, Scott has continued to work on building the site using details gleaned from the continually emerging science and the constant flow of anecdotal reports shared online by self-treaters. He also began to encourage individuals to recount their personal stories in more detail for inclusion in the Detailed personal stories section of the site.

    In the first five years that the wiki was available (Jan 2017 - Jan 2022), the site was edited more than 12,000 times, with 10,000 of those edits having been made by Scott himself.

    One continuing frustration that Scott has voiced is that, while the Helminthic Therapy wiki offers community members free 24/7 access to all the information they need in order to understand and use helminthic therapy, some people prefer not to make use of this resource. Instead, they say they would rather ask questions in the Support group, because they want to hear about the “real experience” of “real people”. Not having taken the time to explore the wiki, these individuals remain unaware that the experience of real people is the source of much of the material on the site. And their rejection of this resource leaves Scott and other group members having to continue to repeat details that are set out, often much more comprehensively, in the wiki, or to give these enquirers links to the relevant wiki pages which they could so easily have found for themselves using the site’s search function.

    In addition to his ongoing work on the wiki, and managing the helminthic therapy groups, Scott also acts as an interface between all those interested in the therapy, whether or not they are active in the groups. These include self-treaters, helminth providers, doctors, researchers, journalists and others.

    Whenever misinformation about the therapy has appeared in articles online, or been presented in broadcast interviews, etc., Scott has done whatever he could to try to set the record straight, in the hope of limiting the damage to public perception of the therapy and minimising any adverse effect of the misinformation on the health of individuals exposed to it, potentially dissuading them from considering helminthic therapy as an option. One example of this activity is the page that Scott wrote for this wiki in response to unfounded criticism made repeatedly to the press about this therapy by a New Zealand academic. See Graham Le Gros and helminthic therapy for full details.

    When time allows, Scott will sometimes get involved in promoting helminthic therapy in various locations online, although he says that this particular activity more often attracts an adverse response from those he encounters, including the deletion of his posts about the therapy by admins in other groups, and, in some cases, even his removal from those groups. So he finds that this is not as productive an activity as serving those with at least some interest in the therapy.

    By 2023, Scott had been involved in the helminthic therapy community for thirteen years, and has said that he considers this to have been the most enjoyable and rewarding period of his life.

    See also

    Here are a few of Scott’s articles on helminthic therapy topics.