Advocacy

One of the worst things ever done to people with this disease was calling it fatigue. I can tell you it feels a great deal more like death.

Early in my illness I became obsessed with keeping my apartment clean, even when I barely had the energy to stand, because I did not want to leave behind a mess when I died. That is the register this disease actually operates in. Fatigue is what you feel after a long day.

What the system has offered me

Two large binders of medical tests, accumulated because nobody has any answers about what this illness is. Roughly a hundred doctors. Over a hundred supplements and medications. Thousands of hours of my own research.

It is one thing to have no answers. It is another to be told the symptoms are psychosomatic and that what you are experiencing is not real, while being ushered out of one office after another. At my worst my father had to carry me into appointments because I was unresponsive.

I have been denied workers' compensation for the chemical exposure that caused this. Denied unemployment. Denied disability twice. Rejected by the Undiagnosed Diseases Network twice. I have lost tens of thousands of dollars and a career I was near the top of, and I have not received a dollar of assistance from anyone.

On housing: the single partially subsidised complex in my state for people with disabilities has an eight-year waiting list. Massachusetts told me their voucher programme is running fourteen years. I have spent the last two years sleeping outdoors year-round because there is no housing resource available to someone in my position — not because outdoor living is a treatment, but because indoor air is what is killing me and nothing else was available.

The advocacy record

I have spoken at three SOLVE Advocacy Weeks now, and nothing has changed. The number of people affected has grown enormously since the pandemic, and patients appear to be suffering as much and feeling as hopeless as ever.

In one of those years, dozens of ME/CFS patients travelled to Washington D.C. for advocacy week — which, if you know anything about this disease, is an enormous physical ask. Not one senator met with any of them. The Care for Long COVID Act, which is close to the most modest bill anyone could propose, has still not passed.

People are dying of this illness, and of what the illness does to a life when no support exists around it. Suicide risk in ME/CFS is substantially elevated compared with the general population, and it is not because the people affected are weak. It is because they are in severe, unrelenting pain, are frequently disbelieved, and can see no path to help. I have lost friends. I am not going to describe the details of those deaths here, because that does not serve anyone reading this who is struggling — but the pattern needs to be named, because it is a policy failure and it is being treated as background noise.

Being unable to get heard

I have a research background and have spent nine years doing my own investigation into this disease, because nobody else was going to. Now that I have findings I think matter, I cannot find anywhere to present them.

I have contacted congressional offices, TED, dozens of reporters, dozens of podcasts, several major ME/CFS advocacy organisations, individual researchers and medical conferences. Almost none of them gave me sixty seconds. When you have ME/CFS you are genuinely invisible — and that invisibility extends to your work, not just your body.

This website is my answer to that. If nobody will offer a platform, the material can at least be public and readable.

What I am asking for

• Fund environmental research in ME/CFS and Long COVID. There is almost no awareness in the research community of the environmental contribution to chronic illness, and to my knowledge nobody is investigating insoluble nanoparticle exposure in this context at all.
• Collect what patients already know. Surveys of treatment response can be run in weeks for almost nothing and would tell clinicians which commonly prescribed drugs this population reports being harmed by. That data is currently going uncollected.
• Give doctors something to work with. An established set of tests, treatments and lifestyle guidance would end an enormous amount of duplicated, exhausting effort by people who have very little energy to spare.
• Fix the housing gap. An eight-year waiting list is not a programme. For people whose illness is driven or worsened by their built environment, housing is medical treatment.
• Stop asking us to be inspiring. We do not need to hear how strong we are. What exactly is the alternative?