Ehlers-Danlos Syndrome (EDS) & The Cusack Protocol
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 someone, one person, anybody - 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.