An Open Letter to Ehlers-Danlos UK, about the latest issue of Fragile Links

Yesterday, I got my copy of the Winter 2014 Fragile Links in the post – The official magazine that goes out to everyone in the EDS society, the big support network for EDS patients in the UK, which has a medical panel which includes Professor Beighton (Yes, as in the Beighton Criteria, literally the person who wrote the book on hypermobility) Professor Rodney Grahame and Dr Hanna Kazkaz – The three names that you’ll find one of somewhere in basically everyone diagnosed with EDS or joint hypermobility’s notes.

Their faces, and their endorsement, is right there in the first few pages of Fragile Links, Which is why I was surprised to find an article under the category of “EDS and Food” that consisted of pure unadulterated pseudoscience.

There’s no doubt that food can be a massive issue for many people with EDS, regardless of the subtype – We tend to have slow gut transit, delayed gastric emptying, a tendency towards irritable bowel or constipation, often difficulty chewing and swallowing due to a dodgy TMJ, and food allergies and intolerances seem to be quite common. A low FODMAP (Low in Fermentable Oligo- Poly- and Mono-saccharides, And Polyols) diet is often advocated for anyone with notable gut problems – Which is exactly what Gibson and Shepherd said it was for [1]. Some of us tend to eat only soft food that goes down easily without needing too much chewing or too much of a challenge to swallow. Most of us need food that’s easy to prepare – Chopping requires hand-strength, standing by the cooker requires leg strength, or the ability to sit in a perching stool for long periods of time, lifting baking trays or roasting tins in and out of the oven takes coordination and strength that a lot of us don’t have. So there’s a lot to worry about, with food.

Enter Yasmin Yekelenstam, making wild claims about the properties of food whilst completely misrepresenting the authors that she cites;

Foods described as antihistamine – Onion (“Rich in quercetin”), garlic, coriander, thyme, basil, turmeric, arugula, spring onion, chives, butternut squash, ginger, water chestnut. This may be true, but if it is, then it only applies to people who need a low-histamine diet, which is an incredibly small number of people, and the article was very unclear about that.

Foods described as anti-inflammatory – Thyme, onion, garlic, coriander, basil, olive oil, carrots, spring onion, chives, arugula, turmeric, white pepper, butternut squash, ginger, coconut, vanilla, nigella seeds, water chestnut. If these were notably anti-inflammatory, then they’d probably be mentioned by doctors when providing NSAIDS, either in a “Oh, you’ll want more of these” way, or in a “Oh, you’ll need to stop eating these, you don’t want to overdose” way.

Foods described as “potentially” preventing cancer – Mushrooms. Having read the two papers linked [2][3], which talk about the use of a concentrated extract of a chemical found in white button mushrooms, which was found to have anti-aromatase properties in large concentrations… That’s a long way away from saying “Prevents cancer”, and I don’t think a “Possibly” and “In animal trials” quite covers how tenuous the possibility is. A friend has debunked similar in the past. Another citation on this was from http://www.mushroomsandhealth.com, which seems to be sort of like the Milk Marketing Board, but for mushrooms. Whatever it is, it’s not a peer-reviewed journal.

Foods described as inhibiting prostaglandins and reducing “brain fog” – Mushrooms. This one came with no citation beyond her own blog. Prostaglandins do an awful lot of jobs, none of which particularly need inhibiting with food (And if they do need inhibiting, such as when they’re inducing an early labour, the advice isn’t “eat more mushrooms”).

Foods described as analgesic or painkilling – Mushrooms, coconut. (I’m fairly sure that the only way a coconut is painkilling is if applied, whole, to the back of the head, until unconciousness occurs) there’s no citation at all on this one, and I’m sure that if coconut was actually an analgesic we’d just eat a dozen Bounty bars a day, instead of all this messy business of altering our mental health with gabapentin and amytriptaline and risking serotonin syndrome with tramadol and good old fashioned overdose with morphine.

Foods described as stabilising mast cells – Water chestnut. Mast cell stabilisers are actual medications, again, not foodstuffs.

A final indicator that the whole article was talking about something contrary to science was the assurance that if you’re avoiding sugar, you could replace the sugar in a recipe with apple puree or dates – Both of which are sweet because they contain huge amounts of sugar.

And I worried – I worried that it required non-trivial amount of scientific literacy to determine that the writer had misrepresented the findings of the papers she cited. I worried that, by putting this article in a magazine that’s headlined by the leading lights of EDS diagnosis and treatment in the UK, that it looks like they endorsed the article (Did they?). Mostly I worried that it’d add an extra level of anxiety to many people’s already fraught relationship with food.

And I worry that I’m not the only one who will have read it and had their trust in EDS UK ruined. They’re usually a great organisation, but I don’t want any part of my membership fee to go towards flogging pseudoscience. There’s enough people out there preying on our desperation – Telling us that for a price, they can give us the information that will make managing our condition with “One simple trick” that little bit easier – that we don’t need our own support group to help them.

I’d love a response, just explaining why the article was allowed to be published.

[1] http://onlinelibrary.wiley.com/doi/10.1111/j.1440-1746.2009.06149.x/pdf Gibson and Shepherd, 2009

[2] http://www.biomedcentral.com/1471-2172/10/12

[3] http://cancerres.aacrjournals.org/content/66/24/12026.short

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2 thoughts on “An Open Letter to Ehlers-Danlos UK, about the latest issue of Fragile Links

  1. Thank you for your open letter and I am sorry that you are not happy with the Low Histamine Chef content in Fragile Links. We always appreciate feedback and aim to use it to improve the service we offer our members. One of our aims is to provide up to date information on subjects that can be beneficial to the EDS community in all aspects of life. We have received many positive comments from members about the Low Histamine Chef and numerous requests for more information on her ideas. As a charity we are always careful about what we share with the community but also feel it is our responsibility to provide members easy access to information that they have requested and may benefit from.

    The article itself was written by Yasmina Ykelenstam, the Low Histamine Chef and whilst we published the recipes, the content is the opinion of the author, not of the charity or of the medical advisory panel.

    We feel it is important for us to provide information covering a breadth of subject matter to the community, including scientific studies, lifestyle changes and recommendations made by other members. It is inevitable that not all articles will be suitable for everybody’s needs or beliefs but we do not believe we should exclude something because it is not appropriate for all members. This is a policy undertaken through feedback from our members stating that suggestions from peers can often be more practically helpful than scientific studies. I appreciate that this may not have been made clear in the article and may be something we should indicate more clearly in the future.

    Recent research has shown a strong relationship between mast cell activation disorders and EDS. There has been a lot of success, albeit anecdotal, with low histamine diets reducing the symptoms of mast cell activation disorders. Many of our members have given us positive reports about the benefits they have had following recipes and advice from the low histamine chef. We do however recognise that no formal studies have been undertaken to prove or disprove this relationship. Part of the issue with this particular article may be the terminology used by the author; low histamine is not necessarily the same thing as anti-histamine. However, we do not feel that this terminology retracts from the benefit many people may gain from the recipes and if some of our members are experiencing benefits then there is no reason for us not to share it with the community.

    As I am sure you are aware, there is very little research into the treatment of EDS, and with a lack of scientific answers, many people want to try alternative therapies or lifestyle changes which may help reduce their symptoms. There is no suggestion in the article that it is a replacement for more evidence based approaches, just something else that people may wish to try. Whilst some people may find a low histamine diet ineffective, it is unlikely that it could be physically damaging and we do not feel the article in any way offers a miracle cure or false hope.

    Thank you for the honest feedback and we hope that this article will not deter you from further participation with EDS UK.”

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