Ehlers-Danlos Syndrome (EDS) & The Cusack Protocol: A Healthcare Lesson About When What Sounds Too Good To Be True.. Is.

2nd November 2017by victoriafenton19

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???

 

Urgh…

 

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.

victoriafenton


19 comments

  • Michelle

    10th December 2017 at 11:02 pm

    From being in that group for over 3 yrs. She never claims it is a cure. Just a road map of things that worked for her and her family. I follow it and am on no pain meds for my EDS. Previously I was on Tylenol 3, flexiril, lyrica and other meds. Now at 49 I take nothing but the supplements and Zrytec and zantac. I can go on walks again with my family and play with my grandkids. Previously I would be in bed by 7pm and most of the weekend.

    Reply

    • victoriafenton

      10th December 2017 at 11:39 pm

      Dear Michelle

      I am delighted that these supplements have helped you in your journey and have given you complete symptom relief. My article is not about the efficacy of low inflammation protocols and supplements, just about the way these sorts of interventions are presented and promoted. Whilst some of the statements are not selling false hope – some of the statements really are. My intention was to point out the accuracy of the words used in healthcare – something I believe to be highly important.

      Congratulations on being medication free – that’s a real achievement and I’m really pleased that the Cusack protocol helped you in this journey.

      Best, Victoria

      Reply

  • Elizabeth Price

    10th December 2017 at 11:11 pm

    I haven’t tried the Cusack protocol, but your article shows you don’t know much about it. Right at the top of the protocol chart it says “Important: This is not a cure but a life-long daily regeneration and maintenance with the protocol .” You admit that the supplements may help reduce inflammation in some patients, and furthermore that the reduction in inflammation may reduce symptoms. Is it really that illogical that some people (especially perhaps people who weren’t as severely affected in the first place) may experience a reduction in symptoms to the point of no longer noticing symptoms at all? Is this whole article REALLY just a tirade against people who use the word “cure” incorrectly to apply to elimination of symptoms? And, if so, why attack the protocol itself which you admit may be beneficial for some people?

    As a Celiac, I hear all the time that the only “cure” for Celiac is a strict gluten free diet. Of course you and I both know it’s not a cure at all, because you can’t at this point in time cure a genetic disease. But it’s an effective treatment to drastically reduce or in many cases eliminate symptoms. Are you going to write another article claiming that a gluten free diet is “too good to be true” for Celiac patients because some people mistakenly call it a cure, and tell your Celiac patients to go out and get a donut?

    Reply

    • victoriafenton

      10th December 2017 at 11:39 pm

      Dear Elizabeth

      Thank you for your comment, and I am sorry to have provoked such anger from you. My intention with this article really was to prevent people from feeling that the only thing necessary to deal with EDS was to take a few supplements. The science stated behind collagen regeneration is based in mechanistic studies in non-EDS sufferers. Whilst the statement “this is not a cure” is a start – to go on to suggest that the supplements recommended to stimulate “lifelong regeneration” will do so in those with connective tissue disorders is simply unproven.

      This is quite contrary to implementing a gluten free diet in coeliac patients, where the intervention quite clearly can be judged to demonstrate villi regeneration and gastrointestinal tissue recovery. There is no evidence to suggest that the Cusack protocol restores the connective tissue of those with connective tissue disorders. This is simply not true of gluten free diets and coeliac disease.

      I am sorry that you objected to my dissatisfaction with the way this protocol is promoted. I’m afraid that to me – with EDS and a whole host of diagnoses that come along with that – language really does matter. And using any therapeutic tool must be done with the correct emphasis and intention. The patients I have received on the back of a Cusack protocol attempt are important enough to have the information behind why their “failure” at this protocol might be nothing to do with them at all.

      I wish you well, Victoria

      Reply

  • Tirina Deignan

    10th December 2017 at 11:22 pm

    Deborah Cusack has never stated this is a cure. In fact at the top of the page is a pinned post which states…”This is not a cure but a daily supplementation to open cell signaling pathways in the cells responsible for connective tissues to eliminate symptoms. ” She has said many times that symptoms will come back if you stop supplementing and that the protocol does not work for everyone. Many people substitute other supplements that are comparable if they don’t tolerate the original recommendation. We also discuss the other nutrients needed for repair. She states she is not a practitioner… so why should anything she says be viewed skeptically. She did her research and this is what she came up with to help. She saw it helped her and her daughters and decided to share the information. I , for one, am very grateful. She does not charge people for this information, nor does she profit from it. You, on the other hand, do profit from sharing your information. I view that skeptically.

    Reply

    • victoriafenton

      10th December 2017 at 11:40 pm

      Dear Tirina

      Thank you for taking the time to comment. I am sorry you view me with such scepticism. Perhaps some of my responses to other comments will help to clarify my intention with this article. Whilst Ms Cusack in many places does not claim this is a cure – in other places there is inaccurate science which suggests mechanisms for the protocol which are poorly founded. I have had many clients in my clinic heartbroken that their connective tissue is “unrepairable even though I’m doing the Cusack Protocol”. I admit, this makes me slightly upset and I chose to write about it.

      The quote you have used highlights my main issue… the science that Ms Cusack uses to claim that this “daily supplementation (will) open cell signaling pathways in the cells responsible for connective tissues to eliminate symptoms” is just not borne out in the literature when looking at EDS patients. I am not saying that inflammatory symptoms do not diminish on her protocol. Just that the mechanisms stated are not accurate and give a false impression of the reality of what is happening for those who follow this protocol.

      Once again, I am sorry you judge my work sceptically but I am glad that you have found support from the Cusack protocol and the group. I have never stated that decreasing inflammation isn’t hugely beneficial – and I’m pleased to hear that such diverse discussion is being undertaken in the Cusack groups to support all patients with a broad nutrient approach to their health conditions.

      With best wishes, Victoria

      Reply

  • Erica

    10th December 2017 at 11:54 pm

    You are incredibly wrong with stating that this is a genetic disease and therefore it cannot be fixed. Our genes are not our destiny. There are many people who have the genes for EDS and they will never be turned on and they will never manifest and symptoms. There are so many reasons why so many people are coming up with EDS now in this modern age, first and foremost are incredibly toxic food supply and the vaccine program epigenetic triggers that did not exist 100 years ago. You are doing a great disservice by sending the message that our genes our our destiny. They are absolutely not our destiny. My family and I have done a tremendous amount of healing through different therapies, a whole foods -based organic diet, and individualized supplementation based on our own genome. Why you would lash out at somebody who is trying to help people to better their health for example with something like the Cusack protocol is beyond me, unless of course you are one of those people who now identifies so strongly with your own illness, that you actually do not want to be well and you do not want others to be well either.

    Reply

    • victoriafenton

      11th December 2017 at 12:04 am

      Dear Erica

      Ooh, gosh wow – I’d disagree that the genes for EDS are turned on or off – that’s not quite how this condition works. But that’s ok, you’re totally right in that some get things worse than others. And you’re also completely right in that certain lifestyle and nutritional conditions exacerbate all of the stuff we go through. That’s literally like my work in a nutshell – reducing all those epigenetic factors which increase stress on everybody, including those with EDS.

      As for your other comments… umm… really? Perhaps you should read my latest article… on DNA and how genes are not our destiny. Or perhaps any of my other material on how I am now symptom free from EDS, POTS, MCAS and Central Sensitisation Syndrome. Or perhaps how I work with the psychology of health and with not identifying with labels.

      Or perhaps not… perhaps you would just prefer to label me instead. Which is fine. Thank you for your time to comment… oh, and for lashing out at me too.

      With best wishes, Victoria

      Reply

  • Alissa

    11th December 2017 at 2:26 am

    Very well written and quite logical. Thankyou… I would love to speak with you further about this article

    Reply

    • victoriafenton

      11th December 2017 at 10:18 am

      Dear Alissa

      I would be delighted to speak with you further. You are welcome to email me directly on contact@victoriafenton.net and I can arrange a time to have a discussion with you.

      Best, Victoria

      Reply

  • Angela

    11th December 2017 at 2:44 am

    I can imagine if people have come to you saying they have tried the CP and are not seeing benefits it would be devastating to both them and you as a caring health care provider. I appreciate your interest in truth and in doing what is best for your patients/clients. I would like to share “anecdotal” evidence from our family’s experience with the CP. My daughter was heading for a wheelchair, with joints so unstable they were beginning to keep her from walking. Her skin had become so fragile it was being torn opening serrated shampoo bottle lids. She had CCI and felt as if her head was not being supported by her neck. Her teeth, though very straight, moved around a lot, which I attribute to laxity of the dental ligaments. She had pain in the bottoms of her feet if she stood more than a few short minutes. These are not “inflammatory” issues. After a year on the CP her skin is strong and she is tighter than she has been in her entire life. He teeth no longer move around. DE brought a reduction in joint pain. To be honest, I have not investigated the science behind all the supplements, as I would normally do. You see, our daughter was dying. The CP was ALL there was left to try. She did not have mast cell issues. She had NO inflammatory markers. Her recovery has been directly the result of strengthening her connective tissue. As I said I have not looked into the science behind each supplement. However, before very skeptically beginning the Protocol, I had already determined in my mind that there must be something that could be done nutritionally, “nutraceutically” , if you will, for this condition. I learned that vitamin C will induce an 8-fold increase in fibroblast activity. I learned what, dietarily, interfered with collagen production. I read one study in a medical journal that suggested using a variety of supplements to treat EDS symptoms as you would use with those same symptoms in other conditions. When I read the research Deborah cited for certain polysaccharides increasing fibroblast activity by 80% I knew this was “the” supplement that had the greatest potential to help my daughter. The idea with the Protocol is not to reverse a genetic defect, though I’m sure there are epigenetic factors that influence collagen integrity. It is not touted as a ‘cure.’ What it does is to reduce (to being manageable) or eliminate symptoms by maximize the amount of (faulty, though it be) collagen the body makes. The more that is made, the stronger the tissue. If the tissue becomes strong enough there may be a dramatic reduction in associated symptoms and thereby co-morbidities. (Many of these co-morbidities, I believe, are due to the limbic-system disfunction that results from an over-reactive brain stuck in fight-or-flight mode from the messages it receives from the altered state of the body that presents with this disorder. Much of this brain conditioning can be overcome with neural-retraining.) You have to follow the Protocol with upmost dedication. My daughter misses a day and she gets laxer. It is possible that SOME of those people who do not find benefit from the Protocol are not being strict with taking it. A diabetic cannot choose to neglect taking insulin and expect to avoid the complications of their condition. Deborah advocates a very slow process of introducing the supplements. As we all know, EDS-ers are very sensitive. For my daughter I opened a capsule and would give perhaps one 1/8 or less of a dose and work up to a full capsule over a period of weeks before beginning the same process with another supplement. For those who cannot tolerate the very specific form of aloe supplement there is mitake. This offers the same fibroblast stimulation polysaccharides.

    Reply

    • victoriafenton

      11th December 2017 at 10:17 am

      Dear Angela

      Thank you so much for sharing your story, and your daughter’s story. CCI is something I have personal experience of and I know how deeply distressing some of your daughter’s conditions can be. I am absolutely delighted – and deeply impressed – by your dedication to the Cusack Protocol, and the success you have witnessed whilst on it. My sense, if I may say so, is that sometimes EDS presents with tissue instabilities which are not perhaps classical EDS presentations, or not of typical severity, which certainly sounds to be the case for your daughter. Whilst I can relate to some of her situation I cannot imagine other parts of it – and my EDS and CCI led me down an entirely different path towards a similar destination, with the doctors determining that I was at risk of not making it through the night on several different occasions.

      I do feel that there are certain parts of either genetics or physiology (which we are not yet clear on) may be affected by the polysaccharide and the fibroblast stimulation promoted on the CP… however, I believe there is no evidence for whether this is affecting the EDS SNPs, or some other ‘issue’ that presents in the collagen of those who also happen to have EDS, I don’t think we yet know. And for you, it absolutely doesn’t matter – at all. Your patience and devotion to the protocol and to caring for your daughter is admirable and I really support your view on how this has helped your situation.

      I also appreciate your hat-tip to the neural network involvement. This is the bedrock of my personal recovery – something I propose to share more about on my Christmas article this year. My story is rather complex, with a ruptured oesophagus creating cascades of issues. However, lessening the fight-flight response is essential for recovery in many conditions. I also believe strongly that having structured protocols which make us feel as if we are doing something actually help deeply with moving these neural networks into a calmer space. In some senses, doing something (anything) is as powerful psychologically as it is physically, if not more so. When faced with life-threatening conditions, the structures of healing can be so supportive. You have clearly witnessed sensational results both physically and emotionally on the CP. My aim with my article was simply to provide solace (and some science) to those who invested faith in the structure of the CP and for whom it did not work.

      I wish you and your daughter continued success, health and vitality. She is incredibly lucky to have your support throughout this. Again, I speak as someone who would not have made it through without my own mother.

      With best wishes,

      Victoria

      Reply

  • Heather R

    11th December 2017 at 4:04 am

    Very well written and informative. I am part of the group only because no one in the world seems to be able to help me out here and I live in Southern California. I haven’t touched the Protocol because I believe in research and evidence based healthcare/methods. I was diagnosed after many wrong diagnoses and appearing as a hypochondriac for quite some time and even after the diagnosis BY my rheumatologist at a university, when I asked about bowel issues, urinary inconntence, extreme fatigue, and a host of other problems, the hypochondriac looks started again and so I have just given up. I received a prescription for long term pain management, but I would prefer to educate myself on what the heck is going on prior to a lifetime of narcotics. It makes me extremely happy to see experts and patients such as yourself providing this information for us to share with family! Btw, I found this article as it was in the Protocols FB group; hence the hate comments. That’s unfortunate. And it’s unfortunate that people don’t understand that there ARE genetic markers, but like Autism, not all are currently mapped. Can’t explain science and research to those who through no fault of their own, simply will remain blind.

    Reply

    • victoriafenton

      11th December 2017 at 10:24 am

      Dear Heather

      Thank you for your comment – and I am sorry that you cannot find more support locally to you. I know the looks you are talking about! Please don’t give up – there is a way through to understand and deal with the complexity of comorbidities that go along with EDS. Most of what you describe is the neural issues that accompany this condition – and as I have just commented to Angela, the neural threat level is really important to manage when you have a connective tissue disorder. The default physiological setting is stress, tension and fight or flight. Manipulating and working through this is a key and fundamental part of creating a life that is not filled with the symptoms you describe. I am writing an article due out at Christmas on my own little journey, so do watch out for it if you think it might help you.

      And thank you also for giving me the heads-up about the fact that this has been posted in the FB group for the CP – I did wonder why I was suddenly having an alerting inbox! Resentment and bitterness is fine – health is a tricky area to navigate and emotions always run high so I expect some people to take things in the context that they wish to see them, irrespective of intention or evidence (or lack of it). We all need hope – and my intention with my article was not to disavow anyone of their hope… just to remind people not to believe in false hopes, or hate themselves if they feel as if the thing that had given them hope (in this case the Cusack Protocol) did not work for them.

      I wish you all the best in your journey.

      Victoria

      Reply

  • Patricia

    11th December 2017 at 7:29 am

    I really appreciate this article, finding by newly diagnosed daughter with EDS and POTS (still waiting for genetic testing results of type) has a thoracic scoliosis on her left. The dirt was recommended by another person with EDS. In looking at the protocol there would be little change in her diet or supplements for we follow most of it anyway.
    Retired from the medical field, I have seen people manipulated to believe in something that ‘may’ help. There are times I think suggestive thought ‘may’ work as placebos work sometimes as well as the real thing.
    I definitely would hat to put my teen on a protocol that did not work producing possibly a hopelessness in her. Thank you so much Victoria

    Reply

    • victoriafenton

      11th December 2017 at 10:32 am

      Dear Patricia

      Thank you for commenting and I am pleased that you have found my article informative in this new journey that you are embarking upon with your daughter. It is true that many people are doing some variation of the supplements on the Cusack Protocol anyway – and things like high dose Vitamin C do far more than stated on the protocol, so people are often on it for other reasons. It’s a great mast cell stabiliser for example, so may affect this area and not the other stated connective tissue issues such as increasing fibroblast activity, which is highly debatable for anyone with a connective tissue disorder. As you say – still useful supplements, but not a miracle cure or a regenerator for connective tissue.

      I appreciate that you want to carefully pick through the evidence for your daughter and your attempts to safeguard her mental and emotional health throughout. I am sure that you will navigate your way through the full diagnosis and the steps you need to take to find her support structures and appropriate therapies. She is very lucky to have you in her corner – my mother was invaluable in my own journey. I wish you the best of luck – and you are welcome to reach out to me directly (contact@victoriafenton.net) if I can be of any assistance in the future.

      Best wishes,

      Victoria

      Reply

  • Patricia

    11th December 2017 at 7:30 am

    Sorry for typos

    Reply

  • Angela

    15th December 2017 at 6:26 am

    I appreciate your response to my earlier comment. I would like to add to it. You have attributed the CP’s efficacy to either placebo or it’s alleged ability to reduce inflammation, particularly of the gut. These causes seem far more plausible to you than any stimulation of collagen producing cells. I would like to point out that my daughter’s connective tissue strengthening on the CP was most certainly NOT due to reduction in inflammation (she’s had thorough blood testing and shows no inflammatory markers whatsoever, and we had done EXTENSIVE work on the gut in previous years to ensure there was no inflammation). And certainly her strengthening of connective tissue was not due to her gut functioning better! In fact, her connective tissues strengthened IN SPITE OF severe functional gastro-intestinal issues that kept her weight in the low 70s (and she is 19-years- old, not a child) for over 1 1/2 years after her connective tissues strengthened. I do realize there are other processes by which connective tissue can be weakened (the effects of chronic stress-induced high cortisol, certain antibiotics, perhaps Lyme, degranulating mast cell mediators, other hormones. None of these processes was the cause of my daughter’s tissues laxity. She does not have Lyme, she has NO allergies/mast cell issues, has not used antibiotics, etc. and has been hyper-flexible since childhood, diagnosed twice with hEDS. Her strengthening took place when and only when polysaccharides were taken religiously. In fact, my daughter takes one capsule every 12 hours to ensure overlap. If she misses a 24- hour period taking the polysaccharides she begins to experience noticeable increased laxity again. I don’t know how many patients you have had who tried the Protocol, worked up to taking the full amount of polysaccharides, were religious then in using the polysaccharides (ABSOLUTELY NO MISSED DAYS), plus had a correct diagnosis for their connective tissue problems, who did not experience benefit. I can understand it being devastating to them and to you as their partner in healthcare to have had hope that was quenched. I agree that caution is warranted in beginning any new supplement. Everyone should exercise personal responsibility (Caveat Emptor) with their health. And I agree that there are many who would look to a pill or a supplement for a quick-fix rather than doing “emotional work” as you call it, that can certainly impact health. Where I disagree with your assessment of the Protocol is in your preferring an anti-inflammatory/gut healing or placebo basis for it’s efficacy. My daughter’s skin that was so fragile before the Protocol that it was tearing when opening serrated shampoo bottle lids. Her skin becoming strong was not a placebo effect. It did not become strong because of inflammation calming down or because gut function was restored. For this reason, I believe the more plausible explanation is that it is the polysaccharides exerting some effect on fibroblasts that have made the difference. Yes, if the collagen produced is faulty then stimulating more doesn’t mean it is not still faulty. However, in theory, it makes sense to me that maximizing the body’s production – the extra volume of collagen – should help compensate for inherent weakness. If enough tissue paper is bound together it will be considerably stronger than a single sheet. If we think about it, vitamin C is known to increase fibroblast activity by 6 times. Lack of it will result in weakening of collagen with aging effects including skin appearance and heart disease (as Linus Pauling recognized). If vitamin C can have such a profound affect on the body’s collagen, it should not be too far fetched to think that another molecule, the polysaccharides might as well. Even if the effects cannot be linked to the reactions such as in the study Deborah Cusack cites, and let’s say they aren’t – I’ll even give you that- the polysaccharides in the aloe/mitake are still doing something, by some means. In my opinion and experience, it’s not a placebo. And it’s not primarily, if at all, anti-inflammatory. It’s late; forgive any lack in my writing.

    Reply

    • victoriafenton

      15th December 2017 at 2:11 pm

      Dear Angela

      Thank you so much for taking more time out to reiterate your points – and please, there was no lack at all in your writing. On the contrary you are explicitly clear and passionate in brilliantly expressing your points.

      I want to reiterate something myself – I feel that each case is utterly unique. In your daughter’s case it does not sound like all of her symptoms can be chalked up to classic EDS collagen issues, if you don’t mind my saying. I was not at all attributing her improvements to the inflammation/mast cell/gut elements I mentioned in my article – because you clearly stated in your first comment that she had no inflammatory markers present. I actually suggest that the Vitamin C, Mitake/Polysaccharides combination in her case is precisely doing their purported fibroblast regeneration job. The mechanism of effect, in my mind and as expressed in my article, is not in doubt – Ms Cusack’s impeccable references and research are actually testament to that.

      The only question, as far as I was concerned in my article and as I am still concerned now, is whether in someone with ONLY the genetics for EDS which are affecting them the fibroblast regeneration was possible. There is absolutely no evidence that this is the case because however much of an increase in fibroblast activity, if the collagen you build is lax, increasing the production of that collagen is not going to help too much. In fact, I have seen the very thing you describe lead to the development of autoimmune skin conditions as the body starts to attack its own skin.

      All this said, from your description of your daughter’s situation I sense that there are more collagen issues at work than solely those typical of EDS and would utterly trust that this protocol is having the physical effect you describe. At this stage, with our current knowledge of the genetics of EDS and other connective tissue “spectrum” issues, I don’t think we know enough detail to know any of this for sure and to make hard lines about what is and isn’t EDS collagen. However, from my experience with the Cusack Protocol, it is those with tissue *fragility* and not solely tissue *laxity* which benefit most. This is borne out by your testimony and I fully support the use of collagen strengthening in cases where such fragility is in evidence. In mine, and many other people’s, situation, fragility is not the issue and laxity is. I have tried the protocol and saw a deterioration in symptoms because of the concentrations of Vitamin C and the maitake – and this is something I see regularly in my practice. That said… my sample size is non-reflective, because I wouldn’t get people through my door who were actually getting better.

      I do not know if this clarifies my position, because the waters of genetics and the individuality of each presentation of EDS is murky. I hope that you now see, however, that I was not disparaging your account or experience – merely offering an outsider’s perspective on the potential role of this treatment in your case and reflecting that your experience is not necessarily a universal one, possibly down to the unique presentation of your daughter’s collagen issues.

      With very best wishes, and the utmost respect,

      Victoria

      Reply

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