About the author : victoriafenton

 
If you have arrived here looking for the article that was posted about the Cusack Protocol and EDS – welcome. However, I have taken the decision to remove this article from my site.
The reasons for this were many – but I will share a few:
 

  • This blog was attracting many comments – many positive comments, many critical comments and many frankly rude comments which were personal attacks – on my practice, my ‘level’ of EDS, my own ‘addiction to my diagnosis’ and my ‘complete f**kwittery’ (I kid you not). Not only was this time-consuming to review, understand and police – but I am fairy sensitive to insults that are hurled without real reason across the anonymity of the internet. And for those of you who were engaging in an intellectual discussion with me, I am afraid that the few who believe that vitriol is appropriate on my own blog have spoiled things for all of us.

 

  • Most of the comments on this post were personal comments about individual cases in which EDS symptoms have been improved at the same time as doing the Cusack Protocol supplements. Each of these personal anecdotes are incredibly positive stories – but they are anecdotes and my article was based in the scientific evidence, of which there is little to endorse the efficacy in EDS patients of what the Cusack protocol promotes.

 

  • A lot of the comments were statements that I did not understand the science. Whilst I do not profess to be a researcher and have never claimed to either know everything or be un-correctable, many of the comments were actually incorrect statements about what the science states. I cannot have inaccuracy posted on my blog because it looks as if I endorse the information shared. Whilst there is compelling and powerful evidence for some of the supplements which are part of the Cusack Protocol, my entire point was that zero evidence has been supplied in clinical trials on patients with genetically-determined connective tissue disorders. Currently (February 2018) this is STILL the case. This does not invalidate Cusack’s evidence – and my article never claimed to invalidate her evidence. Instead, it renders the evidence she provides completely unproven in those with complex connective tissue disorders. This was actually the only point I was making, but it is a nuance utterly un-comprehended by many who chose to send me countless links to research (in mice, mostly) where Cusack’s supplements were ‘proven to work’… And yes, I did try to read every study to check whether I was wrong. I wasn’t. But, like I said – time consuming.

 

  • Some of the titles for the videos which I referenced in the original article (with words like ‘Cure’ and ‘Healed’) have been changed. I have no idea whether this tiny blog influenced that, but it is a good thing regardless. Providing something isn’t sold as a ‘cure’ I have relatively little issue with people promoting something that might help. But Cusack was not originally doing this… and I objected.

 

And then there’s the last comment – which I believe is the most important. I realised, as I watched a barrage of resentment come towards me over this one article in my relatively obscure corner of the internet, that what I did by posting my rejection of this protocol was remove some people’s hope. I was trying to not let people be convinced by false hope, and in so doing I utterly disrespected that when faced with these challenging conditions sometimes it is actually just hope itself which makes the next day more bearable. I am deeply and completely regretful that I didn’t realise that in tackling something factually inaccurate I was doing more that busting myths: I was challenging the very foundations which some people were relying on, and for that I am truly sorry.

 

So instead of leaving my post up here as it was, I took positive action. It’s not about what’s not right to do in EDS – and I don’t feel it appropriate to fight and bicker about whether one person got better on the Cusack Protocol and another didn’t. What helps in these conditions is everyone throwing their hat into the ring and stating what helped them. Not because it’s universal or a panacea (and not because it’s a protocol at all). But more, just because it might help someoneone personanybody – and sometimes that is enough.

 

So in this spirit, I wrote this week (9 Feb 2018) about EDS, POTS, MCAS – and my experience within my own body and my own practice: what helped me, what nutrition and nutrient support actually does make a difference for me and my clients. It isn’t a protocol, it is totally individual and I don’t provide a lot of ‘answers’. But what I do provide is a whole host of ways of thinking about your body if these issues are part of your life – and I share the way that I think about these things. I still don’t think that the Cusack approach is evidenced, it didn’t work for me or many of my clients and I don’t follow it myself. However, rather than tearing down another’s ‘way’, I have now chipped into the ring with my own. It may work for you, it may not – but I hope you feel that this adds something productive to the conversation rather than simply removing another layer of hope from the pool of information regarding connective tissue disorders and their comorbidities.

 

19 Comments

  1. Ian March 12, 2018 at 11:46 pm - Reply

    Hi Victoria! Can I ask what those supplements are that you refer to here: “Whilst there is compelling and powerful evidence for some of the supplements…” I’d really love to make sure I’m doing all I can to help myself.

    • victoriafenton March 13, 2018 at 10:11 am - Reply

      Hi there Ian – sorry to say that it really isn’t appropriate to recommend supplements over blog posts. Your case will be entirely unique – and this post suggests that there is compelling and powerful evidence for the benefit of some of the supplements of the Cusack protocol – just not for EDS. In certain conditions (and I don’t actually make comment on what those conditions are) the supplements Cusack recommends can be useful… but there’s still no evidence (hard, randomised controlled trial evidence) for these supplements in EDS or connective tissue disorders. I still don’t endorse the Cusack protocol – but if you want to try it for yourself there’s plenty of info online if you search for it. I wish you luck. And no, supplements may not be the best way to help yourself, but I’m sure you’re doing the best you can! Best, Victoria

      • Carol G April 16, 2019 at 10:59 pm - Reply

        My doc sent me to this page to read the Cusack Protocol. I have all of the related genetics related to EDS and fit the description of symptoms from the EDS web site to the tee. I am open minded enough, have been educated as a RN so I have a bit of knowledge of how things work and have enough experience to understand the many variables involved so I understand what works for one may not work well for another. I would appreciate any help you can offer as I would like to be able to read the Cusack Protocol and determine if it is something I might want to try. I totally understand why you took it down, but I need and want to be proactive and not just sit here doing nothing. Can you tell me where else I can find it?

        • victoriafenton April 16, 2019 at 11:22 pm - Reply

          Hi Carol – thanks for your message. I applaud your doctor, and you, for trying to be proactive. Around 50% of my practice is connective tissue disorders, most of which are EDS, so I fully grasp that the support isn’t out there and proactive answers are hard to find. However, I am not going to direct or link to the Cusack protocol on my site. The gist of my article was that I completely disagree with promoting this as an approach to EDS. I don’t think that the approach and strategy are enough, presented correctly – and I actually feel that it gives people a really inappropriate understanding of their own physiology.
          Rest assured, this is no reflection on your personal ability to differentiate appropriate from not, I just do not want this information on my site. You are more than likely to find the forums on Facebook will provide you with all of the information that you need – just search for them. I’m sorry not to be able to personally help – but I hope that you find the answers that you’re looking for.

          • Carol G April 17, 2019 at 7:28 pm

            I understand. Thank you for your time.

  2. Julie Olson March 3, 2019 at 1:55 am - Reply

    Hi Victoria. Well said. It wasn’t until I went back to College in my late 30s to finish my Bachelor’s and Master’s degrees that I understood the difference between anecdotal evidence (self reported) and empirical evidence (double blind, same species study). The later is the only was to infer causation or say that a certain treatment works for a specific illness or situation. We were also taught that anecdotal treatments may work for some people and be valid treatments. That was so confusing! Now, that knowledge helps me understand what MAY be useful and what is nonsense. I plan on trying the Cusack protocol because I need that hope that it might just work. Thanks.

    • victoriafenton March 4, 2019 at 7:16 pm - Reply

      Thanks for your comment Julie – and for the dose of science!! Good luck with your anecdotal experiment with the Cusack approach – I really hope that within it there is great success for you. Hope is actually a big part of any approach – and any approach comes with a healthy dose of empowerment and a sense of control. I think this is what makes a lot of things which are perhaps founded on shaky science actually REALLY effective in the realm of chronic illnesses. I hope that this is the case for you.

  3. Stacie May 17, 2019 at 5:42 am - Reply

    I wish I had the chance to read. I don’t believe that supplements alone can save anyone, I just found out I have EDS-H but I’m 53 and I just want to live the best life I can. Sorry you were attacked.

    • victoriafenton May 17, 2019 at 7:39 pm - Reply

      Hi Stacie – thanks for your comment. Cusack protocol might help – it’s just a set of supplements. It wasn’t the protocol I ever had an issue with – it was the false hope, false promises and slightly dodgy science. It’s also myopic – not everyone with EDS needs the same solutions, it’s such a huge spectrum of issues. To be diagnosed at 53 must be somewhat a blessing and a challenge. On one level, answers – on an another, frustrations. My recommendation would be that if you want to find more on Cusack, it’s all over Facebook – you will be welcomed. But be your own advocate. Research widely, work with practitioners who know about this stuff – and really build a team of supporters. You know the saying, “It takes a village” – that’s not just for children, it’s for us all. Never be afraid to ask for support. Good luck, Victoria.

  4. Rachel September 16, 2019 at 8:44 pm - Reply

    Hello Victoria, You guys are really the most knowledgeable in the UK and Europe about EDS…You said that your practice has a lot of EDS’ers….do you give any advice at all about EDS online that would be helpful. My doc here in the US has stated that there is no help and I could eventually end up in a wheel chair with a feeding tube. Is there anything at all to keep our bodies together that you know of based on the medical science?

    • victoriafenton September 17, 2019 at 4:33 pm - Reply

      Hi Rachel – thanks so much for your lovely comments on our company!
      We have not yet launched any EDS advice publicly online, simply because we are very clear that EDS might be a label – but everyone who has EDS is an individual. If you go to my Instagram, you’ll find if you scroll back in my feed that a couple of months ago I did an EDS series which contained a lot of information.
      There’s honestly so much we can do – and a wheelchair and feeding tube are not the eventuality that faces anyone with EDS, however much their connective tissue is affected. I am planning to focus some more resources on this in due course as I progress with writing up all the information I have synthesised over my career… but works like that take time!

    • Mickey Paine December 28, 2019 at 12:22 am - Reply

      Oh FFS! There is so much you can do! What a horrific thing to say! Granted, EDS is so different for everyone, but there’s always something to do. I hope you’ve googled and read some stuff. On Facebook, the EDS life hacks group is super helpful!

      • victoriafenton December 28, 2019 at 12:35 am - Reply

        Wow – so I just read your comment and took this completely out of context, Mickey. For anyone who read my response before I caught my mistake, I deeply apologise. Rachel – Mickey is right. Your doctor was awful in saying what they said… find FB groups if they work for you – and I’m building a new clinic now which specialises in connective tissue disorders so help is on the way… (yes, we will be working worldwide).

  5. Rachel September 16, 2019 at 8:45 pm - Reply

    Also, do you think that leaky gut could be a contributing factor to EDS?

    • victoriafenton September 17, 2019 at 4:36 pm - Reply

      Hey Rachel – good question – but slightly the wrong way to ask it. In EDS, tissue integrity is different. I have witnessed that intestinal permeability and bacterial dysbiosis issues (bugs stick differently to the small intestine is the current thinking) affect us by default. I don’t think intestinal hyper permeability is causal of EDS or a contributing factor to tissue laxity. It IS an issue for inflammation in general, which will affect everyone but those with EDS will get a lot of joint/gut issues due to the inflammation and immune activation created by intestinal hyper permeability (leaky gut).

  6. Janelle Moorefield October 22, 2019 at 7:35 pm - Reply

    It’s been almost two years since you made this post. Do you still feel that this method is effect with your EDS symptoms? Thanks in advance for your input.

    • victoriafenton November 3, 2019 at 3:03 pm - Reply

      Hi Janelle – I’m not really sure what you mean here. The comment you have made is on the Cusack Protocol blog, which I do not use and do not support. The article I reference in that blog talks about diet and EDS/POTS/MCAS trifecta – and there are many truisms in there. Supporting those with EDS is a complex and nuanced art. I have not moved from my statements made in my article – for me. With my clients I work in a host of ways and create bespoke, detailed support plans for each individual.

  7. Nathalie November 2, 2019 at 2:58 pm - Reply

    I wish everyone on the internet could be as well spoken, intelligent, kind, compassionate, thoughtful, and helpful. As my daughter and I navigate through this new medical world of Zebras, reading your words is very comforting. Thank you for reminding me people like you are out there!

    • victoriafenton November 3, 2019 at 3:01 pm - Reply

      Ah gosh, that’s lovely – thank you so much for taking the time to comment and for your lovely words. I wish you the greatest of luck and love in your navigation through this world with your daughter. There are resources, though there is also a lot of nonsense and fearmongering. I am sure that you will find your way – and you know where I am if you need any support at any point.

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