My name is Mark Washco and I am suffering from an auto-immune disorder called Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

ME/CFS affects 4 million people in the US alone (note : some more recent estimates are closer to 5 million at this point). Of this number, an estimated twenty-five percent are severely affected, which often includes being bedridden with little to no functioning. Studies have shown this population to have one of the lowest functioning of any chronic illness, comparable to terminal illnesses like end-stage AIDS or end-stage renal failure.

According to Dr. Ron Davis, "people with severe ME/CFS are similar to a critically ill patient 24 hours before they die, except they live like that for years and years."

Comparative studies have shown the quality of life to be lower than MS, and akin to the quality of life of a cancer patient, dying, in their last week of chemotherapy.

Unfortunately, I am one of those 1 million Americans (25% of 4 million) who falls into the category of moderate/severe. I have recently taken to social media in an effort to raise awareness of this horrible degenerative disease.

Here is a 2 minute video of my daily routine for context:

https://www.tiktok.com/@markwashco/video/7030103442261675269?is_copy_url=1&is_from_webapp=v1

As of now, raising awareness is incredibly important, because there is such little awareness of this chronic illness. Little awareness means little research, little to no breakthroughs, little treatment options, little information for confused and suffering sick people, and little support. It is not taught in medical school pre grad, nor post grad, and there are very very few reputable specialists that we can go to.

I was recently told by a specialist that my knowledge is surpassing his.

It was supposed to be a compliment, but it felt more like a punch in the gut.

We need more money allocated to researching this horrible, deadly, and highly common illness, and we need it right now.

Our community is reliving, or dying, what the LGBT community went through, and similarly, we can end this nightmare with just a little research and funding.

Here is a link to a graphic showing the funding disparity of ME/CFS compared to other illnesses :

https://www.whitneydafoe.com/mecfs/funding_graphic

Some recent data has even been raising some concerns about the potential that this illness could actually be contagious in its early stages, and this is yet another obvious reason why it is absolutely imperative we secure additional funding for research. As of now, it seems like the 1 in 250 people who have this life ruining illness, were simply in the wrong place at the wrong time.

The truth is, that until we know more, it seems that this could literally happen to anybody at anytime, and once you have it there is no escape. Once a patient enters the pathology, they cease to exist.  Data shows that 80% are without care, and living in filth and agony.  They are on their own and often times die slow painful deaths. 

With the new and unprecedented wave of Myalgic Encephalomyelitis coming from long Covid, the time is now to address this gross oversight

When Ron Davis, Professor of Biochemistry & Genetics, and Director of the Stanford Genome Technology Center at Stanford went to do testing on severe patients, he thought he’d have to search the entire state of California to find enough subjects. To his complete surprise, he found all the patients needed within blocks of his home.

These patients, live all around us, on our streets and in our neighborhoods, but you’ll never know they exist, as they are often completely bed bound and off the radar.

This funding disparity cannot be justified in any way.  The amount of funding we are looking for would be dwarfed by the social and economic impact that the assistance of millions of suffering Americans would have.  More people consuming, living, working, and not burdening the government assistance programs that are quite literally necessary for most of us, would unquestionably end up being a clear net increase of GDP.

So how do we prevent our loved ones, friends, family, and selves, from getting this illness? How do we help everyone who has this illness get better, and give them hope of the future?

Simple: Tell congress that we want more money dedicated to researching, understanding, and treating ME/CFS by signing the petition below!

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Congress is currently in the process of debating a huge funding bill, and we think that ME/CFS should be firmly in this conversation.

As of today, the amount that is allocated toward Myalgic Encephalomyelitis is embarrassingly, unacceptably, and inexplicably low.

Only $16 million dollars a year is currently allocated towards research, which is nothing compared to the $3 billion dollars a year for HIV/AIDS, a disease which affects half as many people, and has a higher quality of life. This funding disparity is atrocious and completely without warrant.

This funding will help to save millions of lives from a horribly tragic and painstakingly long, drawn out, and miserable death. ME/CFS affects 1 in 250 people worldwide.

Please help us raise awareness for this awful illness currently ravaging the world in the shadows.