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