Whitney Dafoe is a very severe ME/CFS patient. He cannot eat, drink or speak yet he devotes what little energy he has to bring awareness for this devastating untreated and severely under -funded debilitating illness.
Right now OMF needs equipment. They have tried countless times to get grants from the government to build equipment needed for testing. It is always denied despite the fact that numerous studies show that ME patients have the same quality of life as people with late stage cancer, congestive heart failure and AIDS.
WHO classified ME as a biological illness in 1969. The world still hasn't gotten the message. Like POTS, it is estimated that 90% of patients are not diagnosed simply because doctors do not believe them and often times patients are told it is their fault they are not getting better while doctors even specialist spush exercise -as the ONLY treatment . Exercise and even cognitive exertion has been proven no only to cause short term harm (without any treatments)but can cause permanent baseline worsening again with no treatments support or even validation.
25% of ME patients are bedbound. 75% cannot work. Those who can work often can only work part time and they suffer greatly.Getting on disability for ME patients is nearly impossible and most are not well enough nor do they have the financial resources to even apply for disability here in the US.
Imagine if we treated Lupus, MS and other patients this way.No treatments. Patients are left to suffer on their own and are blamed for their physical illness they have no control over. The public outrage would be deafening. Instead the silence is deafening.
I kid you not a few years ago OMF had to use a hacked palm pilot from the 90's to run their equipment because there is no funding.
As a patient with this disease for decades since childhood and there are STILL not treatments while patients are abandoned and left to suffer with no help. It disgusts and enrages me.
Whitney is the son of researcher Dr. Ron Davis. Dr. Davis needs equipment to test issues with ME patient's mitochondria in hope to find a mechanism of action that can be treated.
The latest hypothesis is metabolic trap/itoconate shunt. Basically ME patients have defect in their cells when it comes to producing energy. There are many known physiological issues in ME patients including, vascular issues, impaired immune function, autonomic dysfunction, auto immunity , neuropathy and so much more more.
If this hypothesis turns out to be proven there are existing medications that can help with at least this aspect of the illness.
I know that most donations to OMF are from patients. No one will help us so we do what we can. This shouldn't be this way but it is the reality.
If you can give, please do. In addition to this fundraising account my husband and I have also donated. If you can't give, sharing this post or the link to the fundraiser on social media platforms really will help.