Open letter to Autism Directory about having CEASE Therapy offering homeopaths in their listings

I sent this text on 7 July 2019 via Twitlonger (a third party app which will send out a tweet for you containing a link to where the text is stored). Authorise the app, write your text and it will do the rest. If you begin the text with an @ it will send it as a reply (in which case don't fill in the title bit as that'll ruin the reply format).

As of 18 July 2019 the listings remain.


https://www.twitlonger.com/show/n_1squjpj

@AutismDirectory @GWT82 Re: https://www.theautismdirectory.com/listing/homeopathy-cease-therapy

Please remove listings* for CEASE Therapy from your directory as the treatment cannot help people with autism and is exploitative. The acronym stands for "Complete Elimination of Autistic Spectrum Expression" (itself a misleading statement).

The treatment involves supplements and vitamins, at much higher doses than recommended by the NHS, and can result in diarrhoea and stomach cramps. Tinus Smits (the inventor of CEASE) celebrated diarrhoea as being some sort of 'evidence' of detoxifixation of vaccines https://twitter.com/UKHomeopathyReg/status/1109070117223235585

There have been various efforts to stop misleading claims made by people offering CEASE (and in some non-UK cases to stop CEASE practice) as this treatment does not work and is effectively a form of medical neglect with potential harms to autistic kids.

1. The Advertising Standards Authority (ASA, UK) has sent Enforcement Notice to 150 homeopaths offering CEASE treatment to remind them of permitted and non-permitted marketing claims https://www.asa.org.uk/news/cease-therapy-claims-must-stop.html. Some of these homeopaths who have failed to comply have been referred to Trading Standards.

2. The Federation of Holistic Therapists (UK) will not accept onto its register any homeopath offering CEASE therapy (or homeoprophylaxis - which means offering homeopathic remedies as a [non-functional] alternative to vaccination) - see Section 3.4 in this PDF https://www.professionalstandards.org.uk/docs/default-source/accredited-registers/panel-decisions/annual-review-panel-decision-fht.pdf and general "not endorsed" info on their page https://www.fht.org.uk/therapies/homeopathy. Their register has been accredited by the Professional Standards Authority (PSA, who report to Parliament).

3. The Society of Homeopaths (SoH) still permits CEASE-offering homeopaths onto their register though the PSA has been working with them over the last two years to try and reduce the risk to the public from this https://www.theguardian.com/society/2018/apr/27/more-than-120-homeopaths-trying-to-cure-autism-in-uk. They were re-accredited in 2018/2018 with some restrictions then, controversially, the PSA (re)re-accredited their register in 2018/2019 https://www.professionalstandards.org.uk/docs/default-source/accredited-registers/panel-decisions/society-of-homeopaths-annual-review-2018.pdf

4. Last week The Good Thinking Society submitted a request for a Judicial Review of the PSA's decision (to re-accredit the SoH) "to keep autistic children safe from homeopaths who offer harmful CEASE therapy" https://www.crowdjustice.com/case/gts-cease-psa/ (also https://goodthinkingsociety.org/good-thinking-files-judicial-review-over-psa-reaccreditation-of-society-of-homeopaths/)

5. Many CEASE practitioners have a listing on an official CEASE website which the Dutch equivalent of the ASA has found to be in breach of advertising standards http://ukhomeopathyregulation.blogspot.com/2017/10/more-on-cease-therapy.html

6. Naturopaths in British Columbia, Canada are not allowed to advertise or offer CEASE therapy, nor are they allowed to offer anti-vaccination materials or advice, nor claim that vaccination can cause autism https://www.cbc.ca/news/canada/british-columbia/naturopath-college-outlaws-therapy-promising-complete-elimination-of-autism-1.4682714

7. Homeopaths are working with vulnerable children without having a DBS check and those who are not members of a Society (registered or otherwise) have no particular oversight for safeguarding. This is effectively a feral treatment (the treatment and advice are often offered via Skype).

In response to the many, many concerns about CEASE and about the regulatory changes some homeopaths are using alternative names (eg EASE for "Easing Autistic Spectrum Expression") or the more general "homeopathic detox" - but cynically the underlying 'treatment' is the same. Please watch out for this.

CEASE Therapy has been around for a while but has only recently become prominent in the last couple of years and as such it wasn't included in the UK's Westminster Commission on Autism publication about Harmful Interventions for Autism https://westminsterautismcommission.files.wordpress.com/2018/03/a-spectrum-of-harmful-interventions-web-version.pdf

Please do not promote this pointless but harmful treatment to people with autism or parents of autistic children.

*These are the homeopaths listed on your page who offer CEASE, please remove these listings.

• Acorn to Oak Health
• Liesje Cochrane
• Paula Lattimer
• Gill Marshall Homeopathy
• Roberta Young
• Jak Measure
• Dr.Joshi's Center for Autism
• Miranda Parson's Homeopathy
• Alison Roberts Homeopathy

Thank you
Jo

I've created a Wikipedia page for the Society of Homeopaths

A few months ago I spotted that the British Homeopathic Association (BHA) and Faculty of Homeopathy (FoH) had Wikipedia pages but the Society of Homeopaths (SoH) didn't and I'd been meaning to create a page to redress that. It's been interesting revisiting some of their activities and with their recent re-accreditation by the Professional Standards Authority (PSA) and the Judicial Review into that decision that has been requested by the Good Thinking Society I thought it was time to get a move on, so here it is: Society of Homeopaths.

The BHA's page begins with a paragraph about when the association was formed and by whom, then highlights that homeopathy is an unevidenced pseudoscience before going on to highlight two examples of BHA's activities. The first is about the quality (apparently not great) of the evidence they submitted to the House of Commons Evidence Check on Homeopathy from 2009, the second is about their failed Judicial Review of NHS England's decision to top funding homeopathy.

I followed the same pattern for the SoH page and so far I have the following information in there.

• An Advertising Standards Authority (ASA) adjudication against the SoH in 2013 for engaging in false advertising and discouraging people from seeking essential treatments
• SoH considered legal action in 2016 against the ASA after it wrote to UK homeopaths to remind them of the rules for marketing material, but they were advised against it by their legal advisor
• In 2017 skeptics* complained to the PSA about the SoH as their members were offering CEASE therapy for autism. The PSA put some obligations on the SoH in place but re-accredited them. One of the obligations was to publish a position statement on CEASE (and monitor risks from member homeopaths offering this).
• In May this year there was an undercover interview by The Times with a number of homeopaths one of whom was both a member of the SoH and also offering 'homeoprophylaxis' (an alternative to vaccination, which doesn't offer any protection). Rather than bring about disciplinary proceedings the SoH defended the member and said they would complain to the press regulator.
• As a result of the PSA re-accrediting the SoH (on 1 April no less) the GTS has filed a request for a Judicial Review to be undertaken of that decision, you can read more about that here (and donate to the crowdfunder).

*the term skeptics refers not just to bloggers and activists by doctors, scientists, healthcare professionals and patients who are concerned about health claims.

Next to investigate, write, reference and add are

• Info on the 2006 Newsnight undercover 'sting' into homeopaths offering homeopathic alternatives to malaria prevention medicine, alongside a lack of general advice about bite avoidance. Some of the homeopaths involved appear to have been SoH members (a spokesperson from the SoH certainly appeared on follow-up programmes). This will take time to unpick as I need to remind myself of the sequence of events, and of SoH's involvement.
• Related to the above, a year later in 2017 blogger @lecanardnoir wrote a post about the SoH's response about their members re: the malaria sting and received a legal letter asking him to remove his post (which he did). Doing so triggered a chain of events resulting in the mirroring (copying, republishing) onto over 60 other sites and was probably the first time I hear the phrase the Streisand Effect (in which by seeking to hide information you end up drawing more attention to it).
• A retrospective link to this 2014 article which appeared when the SoH first began to be accredited by the PSA, pointing out how ill-advised this seemed.
  "It’s unscientific for a medical regulatory body to give accreditation to homeopaths" - New Statesman (18 September 2014)

Obviously I want the Wikipedia article to be reasonably encyclopaedic (kind of the point!) but I don't think it's necessary to itemise every single thing. Here are some things I've not added, or only lightly referenced.

• I've added the latest (as at Sep 2018) official number of society members (according to PSA's accreditation document) but struggled to make sense of the membership numbers overall so haven't included further information. Their current 'About us' website page has 1,200. In their 2009 submission to the HoC EvCheck they give it as 2,500, in 2013 it was 1,300.
• Probably I won't add anything about the problem of Lady Margaret Hall at Oxford University letting the SoH have their conference and AGM on site despite concerns about legitimising homeopathy, not to mention how the university's autistic students might feel about that happening. 
• Also there's some stuff about alleged links between a (former) SoH staff member and the long-since debunked MMR-autism controversy but that might require legal considerations, so probably best left out for now.
• The SoH has today published a news article on the fact that members can add additional therapies to their insurance package. Some SoH members offer a range of services, including homeopathy, but the standard insurance covers them only for homeopathy. Whether or not society members are underinsured might be a bit niche for Wikipedia.

The purpose of this post then is to combine some stuff that's on Wikipedia with stuff that isn't. I think it's important and helpful to have overview information of a topic, particularly where something involves many years of historical skeptic activism. It's easy to forget things and so useful to keep it all together.

Suggestion: [schol-sci-com], a mailing list for scientific and scholarly communication, a companion to @psci_com

Summary: I think we need a "schol-sci-com" mailing list as an accompaniment to the psci-com list, for jobs and events that are scientific but not public-focused.

Or does this list or group already exist and I just don't know about it? Perhaps several do - where are they? It needs to be an email list so that emails can be forwarded and people can sign up very easily. (I'm on LinkedIn in only the vaguest, technical sense, perhaps there are suitable groups there too but they're not very emailable from outside the group... are they?).

About psci-com
Psci-com is a public mailing list for science communicators and those working in or interested in public engagement with science. It currently has just under 4,500 subscribers (who receive emailed posts and can post things to the list themselves) and messages to the list include job adverts, events listings, requests for advice, and general discussion. It's been in existence since at least 1998 (originally created by Wellcome I believe) and I've been its owner since Autumn 2012.

The 'problem'
Regarding the job advert side of things there has been a recent noticeable increase in the number of job adverts coming in to its moderation queue that don't fall within the list's remit of public engagement with science. The list's focus is the intersection between science and the public so posts need to be relevant to both.

Some jobs straddle 'scicomm' and scholarly comms - for example a Health-condition Charity might want a research officer whose role involves liaising with researchers to peer-review the research they fund, so that in itself is not particularly scicomm. But there may be opportunities for the post-holder to give public talks about the research, or to write plain-English summaries, or help answer public enquiries - those sorts of jobs are likely more relevant to the list. [Also charities often have lay members on their research committees]

Each post is considered on its own merits by me, as fairly as I can manage it. Where possible I try and work with the person emailing me to 'bring out' the public engagement-y bits of a job advert. In short, I try and get any job ad posts tailored to the list (much as you'd tailor your CV and cover letter if you were applying).

But for some job ads it's really a struggle to find their inner psci-com and I can't let them through as they're just not relevant. This doesn't make me happy as I know there'll be those on the list who'd welcome the info, but I don't want to make the list an 'anything vaguely sciencey' free for all so I try and keep non-remit posts to a minimum.

A proposed solution
I'd like to propose the creation of a new schol-sci-com type of mailing list that caters for jobs, events, conferences and discussions that relate to the communication of science to scientists in industry and academia, rather than to or with the public. When non-remit jobs come in to psci-com I'd like to be able to say that it's not suitable for the psci-com list but would they mind if I forwarded on to schol-sci-com instead. That doesn't have to be its name though!

While I can set up and run this list alongside psci-com myself it might be something for someone else to do so I'm opening this up publicly as first refusal. There's no pay. I'm not paid to run psci-com but it's interesting and fun and means you get to hear about all sorts of cool stuff. You do actually get a bit of exposure ;) ("Oh you're Jo, I'm on psci-com!" - though so far it's not paid the rent!)

Also I'm really not an expert in scientific publishing, scholarly comms, science business marketing and things like that.

There are lots of platforms available. Jiscmail is the path of least resistance for the 'psci-com sister group' concept, however there's a restriction in that you need an ac.uk email address to be the group's owner. But I think it should be something where people can send an email to an email address (rather than having to submit posts to LinkedIn or however it works).

A note on terminology
The term science communication is generally restricted to public communications, with the term scientific communication for scholarly type comms. It's not exactly ideal in terms of avoiding confusion though!

Here's what Wikipedia has to say -

Science communication

Not to be confused with Science publishing, Scientific communication, or Scholarly communication.

For the academic journal, see Science Communication.

 

"Science communication is the practice of informing, educating, sharing wonderment, and raising awareness of science-related topics. Science communicators and audiences are ambiguously defined and the expertise and level of science knowledge varies with each group."

Homeopathy company in Germany issues lawyerly notices to skeptics for saying homeopathy doesn't work

Yesterday I read a new post from Edzard Ernst highlighting that a homeopathic company in Germany, Hevert Arzneimittel, had sent legal letters to homeopathy skeptics asking them to stop saying that homeopathy doesn't work and to sign an agreement to that effect or they'd have to pay just over 5,000 euros to the company.

A couple of the German skeptics affected have tweeted copies of their letters. Some Twitter apps / platforms have a 'translate' button below tweets, if not you can paste the text into Google Translate and select German to English.

In early May another homeopathy group reported Bernd Kramer to the German press association for his criticisms of homeopathy, which he tweets, and he adds updates to his thread eventually leading to the tweeted legal letter from Hevert shared on 16 May 2019.

On 24 May Natalie Grams (herself a former homeopath) tweeted her own legal letter (English translation), by which time tweeted responses to @HevertNatur's Twitter account had become robustly critical and mocking, and voluminous.

As far as I'm aware people who received the letters had not been critical of the company itself, they'd just pointed out that homeopathy doesn't work.

Given the phenomenon of the Streisand Effect (drawing even more attention to something when seeking to remove some small level of attention already received, see also Verschlimmbesserung) it seems an odd action to take, as lots of people are now sharing info about the legal action. As a consequence they are now criticising the company as well as reiterating that homeopathy does not work with the rallying cry "Homöopathie wirkt nicht über den Placebo-Effekt hinaus" or "Homeopathy does not work beyond the placebo effect".

Today Hevert has published a statement on its Facebook page (though not mentioned at time of writing on its Twitter page) explaining the action it has taken in trying to prevent criticism of homeopathy in Germany. It's interesting to note that they specifically acknowledge the effectiveness of UK skeptics^ in getting legal restrictions introduced on homeopathy* in Britain, which followed from commentary that was critical about homeopathy (a pattern they are hoping to avoid occurring in Germany). Again the (over 200) comments on the page are now critical of the company's actions and asking for evidence that homeopathy is more effective than placebo.

The comments on Edzard's post are interesting and helpful and put things into context in terms of German law. Commenter Joseph Kuhn suggests that the company may be able to assume that, legally, authorised homeopathic products are considered effective: "The German law on drugs assumes efficacy for authorised homeopathic remedies (remedies with an indication)" and so perhaps it's not unreasonable to expect people to respect that assessment.

Eppur (non) si muove, however.

^this includes scientists, doctors, patients - not just bloggers
*For example homeopathy has largely been removed from the NHS and is no longer allowed as a first line treatment by vets. There's also been a tightening of permitted marketing claims and much greater scrutiny of them.

On the overreach of homeopaths and why homeopathy now finds itself in difficulty

There's a scene in Family Guy where Peter (the dad) asks to see the newspaper (Brian the family dog is reading it) and expresses surprise at the lack of mention of a certain ornithological piece. As Brian starts to ask Peter what he means Stewie (the baby) tries to stop him, but too late, Peter starts singing Surfin' Bird.

I can't help wondering if my poor friends think the same whenever homeopathy is mentioned in my earshot ;)

To most people homeopathy is a harmless pastime, you feel a bit under the weather, you take a pill 'for' it (or 'for' you - it's never entirely clear), you get better. If asked they might ascribe the getting better to the homeopathy and ignore the possibility that they'd have got better anyway. Friends of skeptics probably wonder why we get so exercised about this. Here's why.

If homeopaths and homeopathy stuck to "helping people feel a bit better when they're under the weather" - let's call that Moderate Homeopathy - I'd expect you'd not hear much of a peep from doctors, nurses, vets, scientists, patients, skeptic activists and anyone who's ever given a sideways look at a homeopath opining that they can cure or prevent a serious disease - let's call that Extremist Homeopathy.

As is often the case Extremist Homeopathy flourishes in the vacuum of Moderate Homeopathy's utter failure to call it out. It's incredibly rare to hear a homeopath correct or criticise another homeopath's ideas or pronouncements and I can only think of one example (if you know of others please let me know). Peter Fisher (a doctor and homeopath who sadly died last year in a cycling accident in London) strongly criticised those homeopaths who were claiming that homeoprophylaxis (the preventive wing of homeopathy) could stop people from getting malaria if they took homeopathic vaccinations or pills. It can't. He was pretty cross about them having said this (as part of a BBC undercover operation⁽¹⁾) because it was a harmful thing to say (people could become very ill) - and of course it did the reputation of homeopathy no favours at all.

"I'm very angry about it because people are going to get malaria - there is absolutely no reason to think that homeopathy works to prevent malaria and you won't find that in any textbook or journal of homeopathy so people will get malaria, people may even die of malaria if they follow this advice." - note, a senior homeopath said that homeopathy could not prevent malaria - it's not just skeptics who said that.

Since 2006 several homeopaths (who would probably consider themselves Moderate) have been sanctioned by the Advertising Standards Authority for making claims that homeopathy can help people with asthma, fertility problems, fibromyalgia, high blood pressure, menopause and so on. Unfortunately this is veering into Extremist Homeopathy territory as homeopathy cannot help with any of these. The quality of evidence is not in homeopathy's favour though no-one should deny that people might feel better after talking with a kindly homeopath who is able (thanks to charging for it) to spend time listening to the person and make them feel supported.

The most-obviously Extremist Homeopaths are now offering homeopathy to treat or prevent autism. The mistaken notion that vaccination can lead to autism has led to a three-pronged approach to try and prevent or reverse this - in short a money-making scam which can leave children unvaccinated or harmed by ridiculous protocols.

1. Tell the parent not to vaccinate the child (or, more accurate, create a culture of fear in which parents become reluctant to vaccinate and provide a 'safe haven' for them to come to you) and offer them homeoprophylaxis - a non-existent homeopathic alternative to vaccination.
2. For parents who have vaccinated and are now worried about future autism, offer them a Homeopathic Detox Therapy package where the imagined bad effects of vaccination can be undone with homeopathy.
3. Where a child has autism, imply that it was caused by vaccination or other 'toxins' and that homeopathy and high-dose supplements ('CEASE therapy') can now detox the child and reverse autism⁽²⁾. There is no requirement (and no-one even to require it) for these homeopaths to be DBS (formerly CRB) checked and no safeguarding of children.

These types of claims, several made by members of the Society of Homeopaths, have made critics of homeopathy sit up and take particular notice and act on their concerns.

Homeopaths seem to believe that they should be in charge of their own regulation (which is a privilege not a right) but until they collectively stop putting people's health at risk their claims are always going to be closely scrutinised by the same people who've gradually helped to cause the public mood to shift away from seeing homeopathy as being harmless or benign.

Homeopaths will not listen to advice from skeptics but in case this can reach any of them here's my attempt nonetheless at telling homeopaths why they now find themselves in defensive-mode and what I think they need to do:

Homeopathy is its own worst enemy. It has massively overreached in its claims. Doing so means skeptics* have taken notice and acted coherently to try address it. Success has been slow going but is very definitely heading in that direction. The evidence is not in favour of homeopathy so when doctors and pressure groups ask the NHS to defund it they are knocking at an open door. Claiming to cure or prevent diseases while being unable to do so is harmful (directly and indirectly) and until homeopaths have the courage to call out other homeopaths over this you can probably expect greater scrutiny, tighter regulation and more unfavourable news articles.  Any annoyance you feel at skeptics for curtailing your claims and activities is because you've failed to regulate yourselves and you put people at potential risk from active or passive harms.

There was probably a case to be made for homeopathy on the NHS, but homepaths blew it by exploiting its presence on the NHS as a cover for more harmful notions. It is true that doctors are not always able to help patients and some doctors had said they found it useful to be able to refer those patients to what could have been just a harmless distraction (the patient would still be under proper medical care and in little danger from having no real treatment if monitored). Losing them to private homeopaths risks losing that oversight and puts patients at risk from dangerous ideas and bad advice.

If homeopaths had stuck to offering people support without making wild claims I probably wouldn't have written a single blog post or tweet, or written to regulators (I've been in touch with the Advertising Standards Authority, three different Trading Standards branches, Professional Standards Authority in the UK as well as regulators in Ireland and the US). I'd not have signed or shared petitions or lent my voice to calls for homeopathy to be defunded by the NHS (successful) by insurance companies (partially successful) or removed as a first line treatment for vets (successful), and I'd not have welcomed the attitudinal change among newspaper editors and TV producers in several countries which means articles and programmes now actively criticise the dangerous claims made, instead of advertising homeopathy clinics as they used to (still do, but to a lesser extent).

*Not just bloggers like me but doctors, nurses, vets, scientists, angry patients, health activists and skeptic bloggers.

References
(1) Malaria advice 'risks lives' (BBC News) 13 July 2006
(2) Homeopaths ‘treat’ autistic children with rabid dog saliva (The Times) 14 April 2019

See also
How homeopaths push useless alternatives to crucial vaccines (The Times) 4 May 2019

The Times view on homeopathic treatments: Dangerous Quackery (The Times) 4 May 2019
Homeopathic alternatives to the measles vaccine pose a risk to public health