The video above is a personal testimonial about how sick ME/CFS made me especially before I tried mold avoidance.

ME/CFS advocacy and funding suffers from many problems. One of them is that the disease largely isnt visible in the damage it causes to people. A common refrain along these lines is “you don’t look sick” or “you look normal/healthy”. Another is that the disease usually doesnt cause people to die directly of it, although it does in some cases, and also it creates a high rate of suicide deaths despite not causing depression or poor mood. But it does cause a problem for ME/CFS patients and advocates trying to show or tell the severity and horror of the disease and what the NIH and CDC negligence is doing. While the disease usually doesnt cause people to die directly from it, there is a phenomenon of non psychiatric suicidality and suicides being very high in ME/CFS. I say non-psychiatric not because there is anything shameful about psychiatric illness , but there are no cognitive distortions similar to those in depression involved when someone with severe ME, who knows how little chance they have of recovering, chooses to die instead of enduring this hell. I think that this type of mortality should be emphasized. We can honestly use similar language to early AIDS activists who called the people at the CDC and NIH who were neglecting them “murderers” and said “Silence = death”. There is nothing dishonest about saying that Francis Collins and Walter Koroshetz are morally culpable for the death of every ME/CFS patient. As our numbers grow due to LongCovid, and the NIH continues to not act boldly, and to ignore our suffering, the level of suffering and death that these bureaucrats are culpable for grows .

People with ME/CFS do basically die in large numbers from neglect, if we accept that it is an illness like any other, which could be solved by appropriate allocation of research funding. It’s not just suicide either, there is a higher rate of cardiac and cancer deaths among people with ME/CFS. And higher all cause mortality too.

And there are cases like Sophia Mirza’s, in which the inflammatory illness ME/CFS and its comorbidities are directly responsible for the death.

So most diseases are judged by the public and even doctors in terms of mortality. Obviously cancer is one of the classic cases of a disease that almost automatically elicits sympathy, and more funding, than diseases such as ME/CFS, Ehlers Danlos syndrome, and Mast Cell Activation Syndrome. There is even a strange distinction in literature and practice in pain medicine, between cancer pain and non cancer. chronic or acute pain. I have sympathy for cancer patients, but my point is that sympathy, and funding, is not always allocated fairly or rationally in the world of chronic diseases. Why make a distinction such as “cancer pain”, when there are hundreds or thousands of painful diseases? And lest you think I’m just pleading for craniocervical instability or ME/CFS–disorders which I suffer from–to get more attention, sympathy, and palliation, I also refer to disorders such as cluster headaches (also known as suicide headaches because of how painful they are), rheumatoid arthritis, and Lupus.

I think that as a society, we are obsessed with mortality (in every way… we fear it, our medical technology in terms of life extension far exceeds availability of biomedical cures or treatments for chronic diseases or things that extend quality of life, we merely extend quantity of life.). We are so obsessed with mortality that we dont comprehend what makes most chronic illnesses terrible . While many chronic illnesses do actually lower lifespan, what’s bad about many of them, especially ME/CFS and related disorders, is how much they devastate quality of life. Life with ME/CFS is really reducing the term “life” to a technicality. We are breathing, our hearts beat, we haven’t reached brain death, and yet this isnt what I think of when I think of what it means to live. ME/CFS is a living death. And yes, there are many, many statistics to support what I’m saying. the quality of life in ME/CFS is lower than most diseases. But you could also just ask any ME/CFS patient, especially the severe ones. Chances are, they aren’t thriving, and they’re usually not grateful that their lives have been spared. Many of them wish they had illnesses with higher mortality but more awareness and research funding and treatment options… theres a common joke among ME/CFS patients: “the doctor tells the me/cfs patient, i have good news and bad news. the good news is you have cfs, but its not fatal. the bad news is its not fatal.” So while the broader society may only understand illness in terms of mortality and visible deformity, ME/CFS patients are well aware of the many forms of suffering and what they lose in quality of life. There are some recent, important studies that use quantitative measurements of debility and quality of life in ME/CFS as compared to related diseases. It would not surprise most severe ME patients to know that ME/CFS was found to have lower quality of life than many serious diseases, but it may surprise the general public. Those studies also approached the gap between what funding should be based on those measures and how many ME/CFS patients there are, and what it is. Its unsurprising that a study found ME/CFS funding doesnt match its disease burden, but the gap is astonishing (current NIH funding was found to be 27 times lower than it should be).

Additionally, that figure was based on outdated prevalence numbers. Disease burden is based on estimates of debility and prevalence. The prevalence of ME/CFS post 2020 is conservatively estimated to double, at the very least, because of covid-19, meaning we could take the $188 million a year from the article and double it. That’s also assuming an ideal number based on current burden without the idea of making up for past neglect with extra funding to get projects off the ground quicker. That kind of over correction happened in HIV/AIDS and led to an incredible amount of research and results in a short period of time.

The comparisons between HIV/AIDS and ME/CFS are relevant for many reasons, some of them historical. HIV/AIDS and ME/CFS in the United states (the history of what was in the UK called M.E. has a different timeline) emerged at roughly similar times, and ME/CFS emerged in outbreaks that caused similar immune problems and symptomology to AIDS, without the mortality rate. In fact, one of the proposed names for the disease (proposed by doctors that were experts in it) that the hostile CDC rejected was CFIDS (chronic fatigue and immune dysfunction syndrome). Other reasons the comparison has been made is that HIV/AIDS used to be neglected totally in research funding, and is one of the best success stories for disease related activism totally turning things around. Additionally, the activism was anything but tame. ACT UP, the most successful HIV/AIDS activism group, did many extremely controversial and aggressive actions, but they got the job done. Much of their rhetoric and actions would horrify some of the people with ME/CFS that are convinced aggressive advocacy makes us look bad and that if we’re nice to the NIH they’ll eventually throw us a bone.

Also, the comparisons between HIV/AIDS and ME/CFS have been made in terms of current quality of life, by doctors, and patients. One patient says the medical system saved him from death with AIDS but neglected him totally to worse consequences with ME/CFS. An immunologist who treated both groups of patients had this to say: “My H.I.V. patients for the most part are healthy and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or care for their families. I split my clinical time between the two illnesses [AIDS and CFS], and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million (to 4 million) people in the United States alone, has had a small fraction of the research dollars directed towards it.” ~ Dr. Nancy Klimas, AIDS and CFS researcher and clinician, University of Miami

Back to activism, stigma and rhetoric: In my mind, ACT UP and HIV/AIDS is as good a model for activism as we are going to get. Of course many of their actions may be too difficult for the really sick ME/CFS patients to emulate, but all we need is a small group of people, including allies or caregivers. But to come back to the point of this post, we also need rhetoric that is simple, biting, and powerful. Millions missing makes a lot of sense, but I also think we dont need to shy away from the language of mortality. Because this is not living, this is a living death.

Here’s one brave ME/CFS patient who carried out a protest along the lines of what I’m thinking.

Here’s a very similar confrontation, a powerful one, but done virtually, on a call with Walter Koroshetz, head of NINDS.

And finally, here’s my message to Walter Koroshetz as part of the #notenough4ME campaign by MEAction.

(postscript: the images I leave you with are powerful tools in the rhetorical fight against anyone who minimizes ME/CFS, but so are all of the academic sources I’ve cited and personal testimonials. Please make use of them).

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