A couple of days ago, I was linked this video by someone who really wanted to help me learn how to treat Ehlers-Danlos Syndrome without taking any medication for it. I found him in the #MedicatedAndMighty hashtag on Twitter, where he was resolutely telling people that any benefit that they gained from psychiatric medication was “fake” and “switching off parts of their brains” and seemed very confused as to how neurobiology worked.
Although he hadn’t heard of Ehlers-Danlos until I told him about it (He was telling me that I really, really didn’t need opiates, really, at all) he very quickly became an expert through watching Youtube videos, and linked this one to me, to educate me better in just how wrong I was to be following a proven regimen agreed on between myself, a hypermobility specialist and a dedicated rheumatologist, borne out by several years of experience and decades of gradually-improving clinical guidelines backed by large-scale trials and even larger scale observations.
So, this video;
Here’s the key points of the video. The numbers are time-stamps, and the bulletpoints are a precis of what’s being said.
3.45 – Give up all forms of sugar to reduce inflammation. Give up fruit, bread and potatoes.
4.30 – …Apart from coconut sugar and honey, they’re good sugar.
5.27 – All diseases, including diabetes and cancer, are caused by inflammation
5.50 – Stop eating gluten! Gluten is inflammatory.
7.10 – Balance your body’s pH by eating raw fruit! Meat and dairy will make you acidic.
8.10 – Juice things! But you’re avoiding sugar, so don’t just juice fruit, juice carrots.
8.40 – Food is mentioned as being “Ayurvedically satisfying to your stomach”
9.40 – Claims that leaky gut (ususually permeable intestines) is due to “Rips and tears and holes in your stomach, causing food allergies”
11.00 – Talks about “raw” probiotics.
11.50 – Claims that Cod Liver Oil lubricates the body from the inside.
13.30 – “Buy herbs from Whole Foods because the staff are very knowledgeable about herbs.”
16.15 – Stay away from anything with Wi-Fi, it’ll inflame you, so always use your laptops plugged in.(This goes on, at length, encompassing phones, microwaves and TVs too)
18.45 – “Trust your gut, not your drug-pushing doctor”
19.15 – “Go to a naturopath, they’ll show you alternatives to all the medications that you’re on!”
20.15 – “Nutritional psychiatrist” giving out diet plans to “Build up your happy chemicals after so much surgery”
20.30 – What’s The Mood Cure by Julia Ross? Feels like this needs investigating.
22.00 – Acupuncture. For everything.
22.50 – Naturopaths, again, claiming that they’re trained in genuine medicine as well as woo.
23.45 – EFT, which is tapping on your “energy points” until your feelings come out. Hmm.
24.50 – “Avoid inflammatory foods” The same woo as the EDS society was pushing a while ago, hmm.
25.00 – “Nightshade foods are almost poisonous to our body” (At least they are all, broadly, really related to nightshade – Tomatoes, aubergines, etc)
25.50 – Avoid foods containing lycopene.
27.00 – “Turmeric cures cancer, but I won’t say cancer, I’ll say ‘Starts with C and ends in R’ because I know there’s a Cancer Act out there…
28.30 – “Processed food is the devil, our body wasn’t meant to process it.
And this just makes me really, really angry, that charlatans prey on the pain and horror that people with chronic conditions have, and trick them into believing this kind of bullshit soup. She has good points in there (Mostly “Stay active, if you can, gentle stretches and muscle building” and “Get therapy, if you can”) but they’re lost in the scattergun of not eating asparagus and keeping your mobile phone in a locked drawer.
I am scared that she’s wasting time on therapies which make her life arbitrarily more difficult, and ignoring ones which could make her life genuinely better or safer. VEDS is scary, it’s the monster under the stairs for everyone with an EDS-HM or EDS-Classic diagnosis. I understand the urge to just pull up the fluffy blanket and hide under it.
I know that many of the things that she’s talking about can be fun, or can give a sense of much-needed control in the face of a horrible illness. I know I do a lot of things which aren’t medically necessary, which I consider to palliate my symptoms, and some things which straddle the boundary between “medically necessary” and “personally soothing”, as well as things which are purely medicinal.
For example – On weeknights I swim, then I take my evening medication, then I lie in bed and read the next chapter of the Aubreyad in low-light whilst drinking grog. If I miss one of these events, I will feel worse. But let’s look more closely at them.
I swim: This is both physical therapy to build up muscle tone, and something which gives me an enjoyable sense of achievement.
I medicate: This is necessary in the management of EDS – Diclofenac to reduce inflammation, Lansoprazole to protect my gut, Diazepam to prevent spasms (when needed) and morphine to prevent pain and poor-quality sleep.
I read: This is something which is for enjoyment, and it gives me something to concentrate on other than my symptoms as I begin to fall asleep.
My methods here aren’t universals (I imagine that pilates or jogging or rugby would work as exercise, a different cocktail of medications would suit, and reading could be replaced with good food or sex or TV as a relaxing end-of-day ritual), and everyone will have to find their own balance, which may also change over time.
But, and here’s my point, more than eight hundred words into the post – People should recognise what is medicine and what is just soothing.
I adore my TENS machine. It is zappy and fizzy and feels nice on sore muscles (Et sur la moule, ehehehehehe). It is not medicine, it is just nice.
I hate feeling flattened by diazepam. It feels like being stuck under a foot of snow, in a fog bank. It is still medicine, since it stops the dangerous spasms that make my condition worse.
I really dislike courgettes, they taste like sewerage. They are not medicine, so I do not eat them.
I love having codeine skin. It’s a side-effect of taking morphine, which I take for pain relief. Morphine is medicine.
This is another reason why I’m such a firm advocate of the NHS remaining as a free-at-the-point-of-use service; It’s easier to crack on with a course of treatment that’s taking a while for you to feel the effects (Physio, NSAIDs, most talking cures, basically all antidepressants) when you’re not paying out-of-pocket for every week where “nothing happened” – That is to say, loading-in periods, stabilising periods, and even just the time it takes to work out appropriate dosages. It applies to treatments that don’t work as well – After the fourth course of drugs that just turn your spit green and make you want to eat a lot of mustard, it’s easier to feel inclined to try the fifth if you’ve not had to pay for all of them, and aren’t increasingly feeling like medicine is just emptying your wallet along with wasting your time.
That’s the big problem with alternative “medicine” – It almost always gives instant “results”. They’re not real, measurable improvments in your condition, of course, but they’re changes that you spot. You have to think before you eat, so any tiny change in your symptoms gets attributed to the food, and magnified along with it, because you expect a change to happen. You feel better immediately after the acupuncture, or acupressure, or gentle tapping, because you’ve spent an hour in a warm, comfortable studio being touched and listened to. Direct human attention is a powerful drug. As a friend once pointed out to me, even in a non-sexual context, a bit of faffy gentle twiddly massage from your partner can feel nicer than a really competent one from a physio, because it’s just nice to have that sense of intimacy and care.
And alt-med practitioners really cultivate that atmosphere of intimacy; Without it, they’d have no business, because other than the placebo “It feels nice!” their art does nothing, and without that sense of “Oh, but my acupuncturist is so sweet and kind, they’re like a friend!” you’d be a thousand times more likely to realise that they’re just selling snake oil, never go back, and tell your friends not to waste their money there either.
So that’s why alt med and naturopathy aren’t just harmless fun. They’re deliberately selling “relaxing” as “medication” and that’s unethical.