Life Update: 23rd Birthday
On March 26 I turned 23. In my head, I am still 21. The past 2 years my ability to form memories and the monotony of bedbound life leaves me feeling like I have been in a coma. But these photos all from the past month and a half tell a new story.
While I have posted a bit on my stories about IVIG I have been avoiding posting too much here and will only have this personal post, not an infographic. That is because while IVIG has been a miracle for me it is still mixed in its ability to treat MECFS as a whole (most likely to help patients who suffer from the diagnosed or undiagnosed autoimmune or autoinflammatory disease in my case Behcet's / possible neuro Behcet's) It is also extremely difficult to access and not approved for funding here in Australia (or UK, US depends on insurance and comorbidities) making it very costly.
I have definitely been struggling with survivors' guilt in seeing such amazing improvements the past month from completely bedbound and extremely light-sensitive to able to dress up for a friend's zoom wedding, take photos, sit outside in my reclining electric wheelchair (another privilege to own) and move to the daybed many days a week.
With only 5% of people with Myalgic Encephalomyelitis or ME improving and that number most likely even worse in severe ME I know how incredibly lucky I am. Not to mention that my improvement comes a great financial cost and the use of medicine with a limited supply #ThankYouBloodDonors
While I will certainly continue to post occasional updates on my own health, I believe the most valuable content I can create is that which continues to focus on the most marginalized and severe patients in the chronic illness community. To highlight the problems of medical gaslighting harmful treatments and neglect of bedbound and housebound patients.
I do not feel my story is particularly representative of the majority of patients with ME and for that reason, I will continue to push to highlight the statistical reality of MECFS, a disease with no cure or FDA-approved treatment.
Persons with ME don't need a single success story. We need systemic change. That is what I will keep fighting for.
In terms of accessibility of IVIG to ME patients going forward, I actually have my eye set strongly on the bc007 research. This drug is believed to target the same antibodies as IVIG and plasmapheresis. It is also not a blood product making it far more accessible. Since ME is such a common disease I believe a non-blood product drug is a necessity in finding a sustainable cure for the millions missing with ME and millions more with long covid. By not being a blood product there should also be a reduced risk of anaphylaxis making it once again more accessible. To help fund the drug study for bc007 in ME patients check out www.we-demand-research.org And of course, I always recommend continuing to support Open Medicine Foundation as their myriad of research projects are essential for furthering our understanding of not only specific treatments but general principles of ME and avenues for creating future treatment and cures. For more evidence on various experimental treatments see www.meandmore.net/resources
While I hope this post made my end goals clear I just wanted to also comment on why I haven't been posting as regularly. My medical trauma has been particularly bad following the realization that as I get better I will need a lot of healthcare interaction to continue to receive treatment and have my updated condition documented. This has made interacting with chronic illness on social media difficult. Same with my survivor's guilt. However, this does not mean I am giving up on this account. I am just giving myself space and time to ensure my mental health is ready for the topics I want to discuss. I hope that as I continue to improve and heal physically and mentally I will become more able to post regularly again and even able to produce a resource that have been out of my abilities for the past few years like videos and essays.
