I have a lot (relatively-speaking – as it’s a rare genetic disorder) of clients with Ehlers-Danlos Syndrome (EDS). For those uninitiated, EDS is a genetic, connective tissue disorder that has many subtypes (at least 10 that have been identified). In the days when I was diagnosed (yes, I’m a fellow patient) these types were called Hypermobility, Vascular, Classic Types I & II and more. More recently they’ve updated the criteria and the type distinctions, so people refer to hEDS (hypermobility EDS) and vEDS (vascular) etc.
I could write a book on the variations that occur within different people with a connective tissue disorder. It’s a really complex entity, and having EDS can affect literally any (and every) part of your body, because your body is literally built from connective tissue.
Everything that holds you up, holds you together, holds your organs, limbs, joints, muscles and veins in place, everything that roots your nerves into their target and your entire skeleton – it’s all built with, around, on and alongside connective tissue.
No two people’s connective tissue disorder is the same, and yet they emerge out of the same basic issue: an impairment in the production and reparation of collagen which means that there is a lack of structural integrity in places where collagen plays a role. The places where collagen plays a role, as we’ve established above, is literally everywhere.
It is collagen’s ubiquity that makes everyone’s connective tissue disorder manifest differently. Some patients struggle with eternally dislocating joints (multiple joints or just the same one or two which dislocate repeatedly). A lot of patients have an aptitude for the ‘bendy’ sports, though they are recommended not to do them (yoga poses, for example, can be overstretched into and cause actual tissue damage and excessive wear and tear). Many clients have gut involvement, nervous system involvement, immune involvement – and because of the way hormones interact with our tissues and their laxity, it is common for hormones to complicate (and be complicated by having) a connective tissue disorder.
My subjective opinion on EDS comes as someone with a more “Classical” type EDS. I have never broken a bone because I’m bendy and flexible so my joints take most of the impact of falls etc., but whilst I can sublux and dislocate a few joints at will (one without pain, one which causes a lot of pain), it is my view that for many individuals the complications that come with EDS are to do with the comorbidities that come alongside the stretchy tissue, rather than the stretchy tissue itself. (Of course, this is a vast generalisation, and I too have the structural issues within my neck and jaw which have drastically altered my life, and yet it is not the formation of my structure that is the issue – it is the consequence this has).
For me the major problems have always been issues with my gastrointestinal tract – everything from oesophageal reflux, gastroparesis, small intestinal bacterial overgrowth complications and a need to be careful dietarily not to aggravate a sensitive gut lining (so no gluten, for example). On top of that there’s the histamine intolerance issues which for me are associated with something called Mast Cell Activation Syndrome, in which the connective tissue isn’t robust enough so the mast cells held within it can degranulate (or burst) too easily and create unnecessary but unavoidable inflammation.
Then, on top of this, there’s the nervous system issues. For me it’s Postural Orthostatic Tachycardia Syndrome – a dizziness issue which at its height saw me veer uncontrollably into the path of oncoming buses. Sometimes this presents as utter wooziness and nausea just climbing a flight of stairs, sometimes just standing up can be a trial.
Then there are the patients with bladder complications, many people with EDS tend to have hormonal complications, often (as with me) there are structural implications which affect the nervous system supply to the entire body which means that different people can present with various neuropathies (tingles, crawling sensations, lack of sensation etc.)… The list of complications can go on and on.
All of these are real oversimplifications of both my issues and the complexity of the issues that others face. It also doesn’t really shed light on how interconnected these issues all are. I will never know whether my gut complications were to do with gut tissue itself or my neck problems and the vagus nerve, whether my histamine issues were to do with my nervous system or mast cells – and whether my hormonal problems had their origins in nutritional deficiencies or in mast cell issues or the complications of a high stress burden.
However, I hope that you get the impression that life with EDS can become a juggling act of trying to deal with a multitude of physical ‘complications’. Moreover, we also have to tackle the many and various coping mechanisms our bodies employ in a bid to alleviate the symptoms and feel stronger and more able to cope in life (like having a very high fight-or-flight response mechanism and/or a real propensity to fatigue which keeps us from draining our systems by being too active). Living with EDS is complex.
So you can imagine our delight, excitement and thrill at the concept of a potential “Cure”… and that’s where The Cusack Protocol comes in… It promises to be a “cure” for EDS.
Is EDS Something That Can Be Fixed?
Please take a collective deep breath with me because this is going to be a huge rant. I have, above, mentioned the words “genetic” several times. That’s for very good reason… EDS is a genetic condition.
It’s important to point out that there are people with EDS who are just a bit bendy. There are also people with EDS who are in wheelchairs because the pressure on joints causes almost constant pain and dislocation.
But, no matter the severity of the EDS or the nature of each individual’s experience and comorbidities, I must stress that IT IS GENETIC. This is the one gift my parents wish they’d never given me. However, the impairment which creates the faulty collagen is literally built into the DNA of someone with EDS, and the way this codes for the creation of collagen fibres.
Whilst genetics are not destiny, some genes are more decisive than others. The EDS genetics are this way. EDS cannot be fixed.
The Cusack Protocol claims that through an extensive list of various supplements, mechanistically shown to improve collagen formation and cell repair signalling, that EDS can be “recovered from”. Just the titles of various videos and documents on Deborah Cusack’s YouTube channel (Google it if you want to see, because I’m not going to link to it) suggest:
- My Daughters Recovered From EDS
- Confessions of an Ehlers Danlos Survivor and Pioneer
- How I Regenerate My Connective Tissue Collagen
There are some other, more measured titles, such as “My Family Is Symptom Free” and “Mast Cell Activation – How I Reversed My Symptoms”, but there are also some other bizarre and outlandish claims such as D-Ribose being a ‘cure’ for Fibromyalgia.
An examination of the “HOW” behind these miraculous cures reveals that the supplements taken focus heavily on Polysaccharides – taking 100% Fractionally Distilled Aloe Vera Juice or Maitake Mushrooms as incredibly rich sources of Polysaccharides which, apparently, “restores connective tissue integrity (by) stimulating an 80% increase in fibroblast production of collagen”.
However, the research which apparently ‘justifies’ these therapies is mostly theoretical at best. Let’s examine just a few of the quotes from the research papers presented as “evidence” for the efficacy of this protocol:
“Taken as a whole, the oral polysaccharide literature is highly heterogenous and is not sufficient to support broad product structure/function generalizations.” – i.e. there is not really any solid evidence or predictable outcome to supplementing with polysaccharides orally.
“The Aloe polysaccharide may play an important role in the extracellular matrix remodeling during wound healing.” – Yay! you’d think – but note the ‘may’, this study is far from conclusive – and it’s all from a study in vitro (i.e. in a Petri dish not a person)
“Aloe vera increased the collagen content of the granulation tissue” – again, Yay! – but hang on – this is in rats, and this is in wounds. This has nothing to do with people AT ALL – let alone people with a GENETICALLY ALTERED ability to produce collagen
And then there’s the fact that some of the studies linked to led to internet landing pages and not research at all…? So you’ll forgive me for being just a tiny bit sceptical.
But what is really being suggested by Deborah Cusack as the protocol that has “cured” her entire family’s EDS?
She’s Not A Doctor, She’s A Patient and a Mum – So What Is She Recommending – and Why?
This reason this whole protocol and the crazy claims anger me so much – aside from the fact that there are 9407 people in a Facebook group being convinced of this hope for a ‘cure’ for their condition – is to do with the shoddy reading and application of the science.
It is a nice idea, and yet entirely fanciful, that aloe vera, some probiotics, an amino acid, some diatomaceous earth and a bit of d-ribose can completely cure people. Of anything at all, let alone a genetic connective tissue disorder. The mechanisms highlighted in some research at best can be used to conclude that fibroblast and cell regeneration assistance may be offered by some plant compounds administered in certain doses and in certain cases. There seems to be a smattering of evidence that certain plant compounds can have interesting cell signalling and regulation effects on the growth factors of collagen fibres. But as you can tell above from the first statement I highlighted – nobody really knows quite what is happening or the dose-response relationship that makes any sense.
But the Cusack Protocol demonstrates an even further lack of a basic understanding of science – because people with EDS have collagen that doesn’t work in the same way as anybody that was studied in any of the tests or research that is cited.
Basically, the weak mechanistic evidence in vitro and in rats has literally no application to humans, let alone to humans with a genetic impairment in the way they produce collagen.
Our collagen is, genetically, just different. Who knows what that increase in fibroblast collagen production does in those with EDS?
It’s important to note that one of the features of EDS is that when we get a cut we get some really crazy scarring – it’s white and translucent and slightly depressed below the normal line of the skin. This is because the collagen we make isn’t that strong – it’s not as good as the rest of our skin and it is a little too vulnerable. I am therefore struggling to see how taking some supplements which supposedly “boost fibroblast production of collagen” (which is doubtful, but let’s just assume it works) helps us at all.. surely we’ll just produce more of the faulty stuff??? How is that a ‘cure’? How does that even help with anything?
Furthermore, and exploring some of the other ‘curative’ supplements: has this woman ever heard of NOS genetics and does she know how it works in those with EDS and whether that’s all the same or not (because this would affect her recommendation of the amino acid L-Arginine – not to mention whether there are other nutrients which are needed alongside this Arginine).
Why is she recommending diatomaceous earth for everyone (does she even know what their gut function is like???).
Why is she promoting that PQQ “eliminates bladder dysfunction” (um… PQQ is a cellular antioxidant that’s been dubbed ‘better than CoQ10’ but I’m pretty sure it doesn’t have a laser-focus on anybody’s bladder) and…
Literally why oh why oh why is Culturelle (a relatively common and fairly decent, but by no means exceptional, probiotic) cited as reducing bone pain? No seriously. Bone pain… Culturelle… A probiotic???
Can Reversing EDS Be Done?
Now, let me be clear, I myself claim that I have (largely, though not entirely) recovered from my own SYMPTOMS of many of the associated conditions that came along with my EDS. But I have, in no way, “cured” myself of a genetic complication. Because that’s actually, properly, no hesitation, impossible.
What I mean by ‘recovered from my own symptoms’ is that I no longer walk into buses, I’m rarely dizzy, I exercise and keep moving all the time and I’m pretty de-stressed about life in general. I have to be careful about stuff and yep, I live what some would consider a strange existence… but I’m (fairly!) sane, I run two websites, I help people all over the world with their health problems and I’m not 4 ½ stone anymore (yep, that happened).
But, as I said to a friend the other day, I didn’t get here using pills – I’m lucky if I remember to take my Zinc and B Vitamins (I have krytopyrrole syndrome as well, which affects the absorption of these). Moreover, my conditions can vary and alter without my supplement regimens changing whatsoever. My success and/or suffering is not built on vitamin pills or probiotics.
Instead, I have definitely minimised the distress and symptoms of Ehlers-Danlos Syndrome. And I mostly did this by changing the way my body and being responds to stressors. Everything about the struggle of EDS is the impact of stressors – on our joints, our nervous system, our detoxification systems, our digestive system and on our immune system. It is in altering this that SYMPTOMS can be alleviated – but make no mistake, we’re not curing anything…
You can improve stability in joints by strengthening exercises and you can (if you want – though I don’t) take some supplements to assist with joint and tissue health (things like Glucosamine are reported to help – I found it utterly useless). You can also (and I do do this) eat a diet rich in nutrients which help cells and detox systems and which provide your body with all of the macro- and micro- nutrients which assist with overall optimal functioning.
Then you can take digestive supplements and/or eat a nutritionally careful diet to help with the gut symptoms (I do this). And yes, you can work on how you perceive and feel about the world and you will be able to completely rewire your nervous system and your response to the vulnerability and stress that your body experiences (and, spoiler, but this is the most important bit – above and beyond diet, nutrition, sleep, exercise, supplements, toning exercises or any ‘therapies’. In fact, I’d argue that you could just do this last bit and be 95% of the way there).
My worry is that in the complexity of the emotional work mentioned in the previous sentence, a lot of people get lost. Instead, they would prefer a supplement protocol and a few pills to take. And yes, there are people who highly enthusiastically endorse the rather more simple Cusack Protocol as a route to ‘fixing’ EDS (I’ve seen Facebook posts claiming that “my daughter was dying of hEDS – now she’s getting better”…) Whilst some are cautious enough to state that “of course, she’s not reversing the genetic condition that produces faulty collagen” and “technically it’s incurable but…”, there seem to be others (including Cusack herself) who make the claim that these supplements are somehow curative.
But I just cannot see that the supplements recommended would work in the way that she suggests.
Instead, I noticed that there are ingredients in the protocol that I know if I took at the height of my histamine and mast cell flares would have made me positively ill: Aloe Vera itself made my gastrointestinal conditions worse (think bloating and terrible gut spasms) and the probiotic would cause a major histamine release…
I will be utterly fair however and state that I do not doubt for a moment that the Cusack daughters, and many others who have used these supplements, actually did experience a benefit.
So What Is This Protocol Doing Then?
The one rationale I can see for this protocol – and why I will acknowledge that some may have experienced benefit – is the direct effect that these supplements may have (for some people) on one very specific thing: inflammation.
Everything that I mention in my ‘management’ tips above revolves around regulating inflammation. The reason I run Paleo In The UK and the whole focus of a Functional Medicine practice is all built on minimising inflammation.
The body of someone with EDS is having to support and buffer a lot more sensitivity and vulnerability than ‘normal’ people. Inflammation is the obvious consequence to all this buffering and stress and so one of the key pieces I focus on (and the justification for dietary specificity and emotional/psychological re-framing of how I perceive the world) is the foundational requirement to alleviate inflammation. Doing this, from every angle possible, helps me not run up against the uncomfortable side effects of having EDS.
For certain patients, the supplements recommended in Cusack’s Protocol – everything from Aloe Vera to probiotics to diatomaceous earth and L-arginine – will work to reduce inflammation and improve the overall health of the gastrointestinal tract, which in turn will allow for less mast cell activation, less inflammation from immune flares and a reduction in stress and joint pain as a result.
To my eyes, rather than fancy fibroblast up-regulations, the mechanism through which these supplements might work is their role in restoring the health of the digestive tract and, in so doing, they may help to minimise the inflammatory load by down-regulating the immune response emanating from the gut.
This simple, yet vital, action will reduce joint pain considerably (due to the consequential reduction in systemic inflammation that occurs when gut inflammation reduces). It might seem on the surface like these supplements are a miraculous ‘cure’ for EDS, but in reality in reducing systemic inflammation these pills may just remove many of the roadblocks to functioning that those with EDS have.
And yet, there’s also supplements that I think are missing from this protocol (like a good zinc and some B Vitamins, as mentioned above, possibly some Omega 3s, possibly magnesium, quercetin etc.). There’s also a lot that’s not said. Could you take a few supplements and continue to mainline candy like it was going out of fashion and still hope to feel well? Probably not. Could you live in a toxic home, with toxic relationships and still thrive taking these pills? Also unlikely.
There are also massive contraindications to recommending PQQ (a really good antioxidant) to everyone without knowing the status of their ability to detoxify, the health of their gut and integrity of their gut lining. The same goes with Aloe Vera and diatomaceous earth. In fact, I have a fear that some of these supplements given to EDS patients with many comorbidities (i.e. not just connective tissue issues which revolve around joint laxity but also gastrointestinal problems, POTS problems and overall mast cell issues) will aggravate their ailments, rather than reduce them.
I have no doubt that this supplement protocol will help some in their battle with the symptoms of a connective tissue disorder, though I highly doubt that it is directly improving the strength of their specific collagen fibres. This may be a case of ‘good treatment, wrong mechanisms to justify it’. And yet, I think it’s a little less cut and dried than that.
What I will say is that a carefully constructed life which focuses on the inflammatory burden will have a demonstrable effect on the symptoms (not the cause) of EDS. This may involve a carefully and personally-specific set of supplements. It might not.
This is not about avoiding all inflammatory situations. That’s neither possible, nor a healthy attitude, because it just reinforces the idea that someone with EDS is too fragile and must be wrapped in cotton wool because life is threatening (and believing this is a recipe for immune dysfunction and mast cell issues).
However, if we focus on building up buffers and healthy coping mechanisms which allow us to ride the rollercoaster of life experiences in a healthy way, managing, offsetting and sometimes just accepting any inflammation or stress which occurs as a consequence, then relief from the distressing vagaries of EDS can be achieved. Sometimes this may involve careful supplement support protocols. NEVER will this involve viewing a supplemental regimen as a ‘cure’ for the EDS itself, or any of its comorbidities. EDS can be managed and lived with. I would even argue that some elements of my EDS allow me to thrive.
EDS cannot, however, be ‘cured’ – and any protocol or practitioner selling you a different story should be viewed very sceptically indeed.