Category: Uncategorized

On Suicide in ME/CFS

Over the holidays, the ME/CFS community lost Beth Mazur – a leading member of MEAction, the biggest activist organization for ME/CFS.  She was a kind and well liked member of the ME/CFS community and someone who had been suffering with that illness for many years.  She died due to suicide. You can read more about Beth’s life in a post written by Julie Rehmeyer here.

It’s difficult for me to think about events like this because of my severe level of illness.  Beth may have had some level of depression as well as ME/CFS, but ME/CFS often leads to a phenomenon of non-psychiatric suicide.  That is, suicide that is due to intractable, terrible life circumstances and not due to mood disorders, distorted thinking, etc.

I often don’t want to talk about suicidality, due to the possibility of putting people off, but I really want people to recognize that ME/CFS inevitably leads to death in many people, when they are not given the help they need.  

Whether that help is in the form of cures and treatments that would come from research funding into the illness (for context the NIH drastically underfunds ME/CFS research relative to the disease burden and seriousness);  Or whether that is in the form of social support, access to specialists that can at least alleviate symptoms or some of the comorbidities, palliative care or welfare benefits, caregiving, etc.

This I don’t feel comfortable speculating on what specifically caused Beth to take her own life, but I have been thinking a lot about how we should talk about suicide in the context of this disease.

Suicide is not some generic problem we can generalize, or in which various cases are fungible. 

It is not a problem that we can treat as some social ill to be fought without reference to the specific factors that cause people to take their own life.  I try to avoid talking about it as something that is OK, or sometimes even the best option.

I don’t want my content to be triggering for people who have had direct experience, personal experience with losing someone to suicide or who are suicidal potentially for reasons which are found temporary or fixable. But, suicide can’t be looked at as something which is the same in in all contexts.

In ME/CFS, suicide is often a decision that people come to often is the last resort, often very reluctantly, as a way to relieve not only their extreme physical discomfort, which might be bearable if they had other things to live for, but also to end their living death.  

The decision comes in a state in which they lose everything that is essential to their identity.  Their ability to make art, work, or even have romantic relationships.  Their ability to do basically anything that requires metabolic energy.  Their ability to act or think about the world or travel.  Their ability to even listen to music often or view art.

When people lose all this, and when people don’t have a way to gain any quality of life in this illness, they return to suicide, in my view, to end their suffering.  The kind of suffering that leads to this choice, and the choice of suicide can’t be viewed outside of that context.

But there are things which can happen to one which are so terrible that they can cause one to do things that go against one’s own values – that can be so much more immediate and extreme than the imperative to follow a given religious or ethical law such as the injunction against suicide.

ME/CFS and the related illnesses is one of these terrible things which can end up wearing down once commitment to one’s values, such as religious or ethical opposition to suicide.  Despair and grief are not the same as depression or other mood disorders. 

Suicide in ME/CFS often seems to be undertaken as a rational and measured response to an extreme of physical suffering, grief, and the eventual erosion of possibilities for remission. While ME/CFS causes one to crash after cognitive exertion and causes cognitive problems, it does not cause the types of cognitive distortions found in depression and mood disorders.

So, one of the main reasons that I am generally against suicide is that suicide in depression, or mood disorders such as bipolar, is not based on an accurate and lucid calculation that one’s life cannot get better, but more often based on an impulse caused by the thought distortions and effects that accompany those psychiatric disorders, and which often can pass or be treated. 

(When I say that I am against suicide generally, I don’t mean to say that I am for any measures which would restrict people’s bodily autonomy, which I strongly believe in, just that I strongly personally think that it should be discouraged whenever there is any other reasonable option)

In the case of people with ME/CFS, they have an illness with no FDA approved treatment. Usually the disease course and prognosis are fairly grim.  Sometimes they have associated depression, but often not, and it’s not ever the main problem in the illness. 

When they end up coming to the decision to take their own life, often they have exhausted more options and tried more desperately to recover their own health or to work for a societal/governmental change that could lead to improvements in their life, more than people outside of the community can possibly imagine. 

They are not life denying, passive, annihilistic, and they do not take their life or life itself for granted. But rather have an extreme hunger for life.

Many of these people, including me, are optimists and problem solvers, who do our best to compartmentalize and not become overwhelmed with the grief or pain, but simply strive daily to find a way out of this labyrinth, whether that way is through science, through finding and working with the right specialists and/or experimental treatments, through activism, or through some attempt to deal with this spiritually. 

When I hear about patients like Beth coming to the end of what they can endure and committing suicide, I feel grief for all of us, and anger toward the system that led to this. 

It makes me want to explain all of these things to people on the outside because the way people look at suicides like this is so often ignorant and deeply removed from the reality of this illness. 

People who think of suicide as a selfish or impulsive choice or as a weak one, have not only not dealt with what people with this illness deal with, but perhaps have never even considered that there are such extreme circumstances that make suicide one of the only ways people have out of such a living death. 

I see suicide in ME/CFS, especially severe forms of the disease, as akin to someone who jumped out of the buildings on 9/11 to avoid burning and suffocating to death, or a soldier who commits suicide to avoid certain torture in captivity 

So I don’t celebrate it or condone it, but I can’t condemn it either. All I can do is hope that the circumstances that cause this high rate of suicide in ME/CFS be fixed.

This starts with awareness, activism, and support from the general community. It starts with bearing witness. 

P.s. I have written a longer piece elsewhere about me/cfs quality of life and mortality https://openletteropenmedicinefoundation.com/ME-CFS-is-a-living-death/ 


Another Open Letter to the Open Medicine Foundation, by David

Mold illness is claiming so many victims. Mold has a clear epidemiological and anecdotal connection to ME/CFS and yet the Open Medicine Foundation will not look into it.

However, people continue to ask them to do the right thing. Thanks, David, for your video.

David made it to Truckee, ground zero, along with Incline Village, of the original Lake Tahoe CFS outbreak, and the home of Erik Johnson, the patient zero of that outbreak, who pioneered mold avoidance.


Brave ME/CFS patients protest (and are arrested) at the NIH

Those of you who have read enough of my writing understand my only issue isnt with the Open Medicine Foundation, but also with the NIH, Walter Koroshetz, and Frances Collins, for doing nothing to help ME/CFS funding increase to a reasonable level.

The protestors in this video are doing what I have always thought is necessary, but have been too sick to do–civil disobedience directly at the NIH campus. Interrupting a meeting of Frances Collins and shouting about ME/CFS funding being ignored by him, is a good way to get his attention. One reason there isnt a lot of this type of protest, similar to AIDS activists militancy, is that people quickly become far too sick to travel and protest. But I think despite that, the only way we will make headway is by doing protests like this. we need to get allies to do it who are healthy, or more moderately ill patients.

Also, we need to publicize this far better. This only has 271 views on youtube. it was quickly forgotten. A media strategy that can court some controversy and have people outside the ME/CFS community wondering “why are those people so upset at the NIH/Frances Collins?” is neccessary. I’m not even being critical of MEAction in general. they have been more effective at protest organizing and communication than any other group I know of. I’m just saying it’s really too bad that more people havent seen this particular protest.

I hope that #longcovid patients take heed of what I’m saying, too. While I’m sure many of you are too sick to protest too, one problematic pattern that occasionally happens in the ME/CFS community is that people initially are in denial about how bad their disease is and don’t want to join advocacy or support organizations. Then by the time they get sick enough to get past this stage, they are often too sick to protest or do much to change their circumstances collectively. I’m not merely pointing fingers here, I can attest to this pattern because it is something that applies to me personally, as well as many other people I’ve seen.

So, its important to come to terms with your illness quickly, so that you can find a way to do something about it, whether its protest, research, or media and art of some kind.

My website doesn’t yet have a ton of views and isn’t high in search results yet. But I hope that this post in particular gets a few views, because this protest video should be seen by a lot of people as a template r future protests.

(SEO/tags: #longcovid, mcas, ME/CFS, protest, NIH protest, #notenough4ME, ACT UP, aids activism, MEAction, Frances Collins, ME/CFS is a living death, Body Politic, Long Covid activism, direct action)


Love is not enough

https://youtu.be/zOuuMePw8DU

this is a brief video discussing some of my thoughts on the dynamics between caregivers, friends, allies, family, and patients with this horrible disease and how sometimes love and support isnt enough to save them.

it was inspired by something heather colman McGill said but this is wholly my interpretation and I sadly cant ask her for her take on it . It’s just hat what she said stuck in my mind a lot

this might be valuable to you if you are a family member or caregiver or friend of someone with me/cfs and are troubled by the whole situation and questions of how to support them

Tags: ME/CFS, chronic illness, craniocervical instability, mcas, mast cell activation syndrome, mold avoidance, long covid, covid long-hauler


ME/CFS is a Living Death

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).


Origin Story Part III–My journey and the Lake Tahoe Outbreak

this episode isnt the first, but it is the one most focused on the events of lake tahoe /incline village in 1985-1986.

it includes lots of detail about my personal journey but also lots of info about the Lake tahoe CFS outbreak, and the possible environmental and viral origins of it. We talk mold avoidance, cloud seeding, cyanobacteria, Erik Johnson, nanoparticles, and “chronic fatigue syndrome”.

here it is:
https://soundcloud.app.goo.gl/3Tucb


Help me live and thrive and continue doing this work, please

Heres my fundraiser. If any of you can support it, i implore you to.

https://www.gofundme.com/f/help-walker-beat-me-cfs?utm_source=customer&utm_medium=copy_link&utm_campaign=p_cp_guide_do&member=11756239

if i recover from this illness I will be a skillful and fierce advocate. I have many of the necessary tools to do so, without the energy or resources.

thanks

(tags: Open Medicine Foundation, MCAS, mechanical basis, mechanical basis cci ME/CFS, Ron Davis, whitney dafoe, toxic mold, Jen brea mold, mold avoidance, tryptase, mmp-9, craniocervical instability, tgf beta is high in cfs and in connective tissue disorders, tgf beta)


Dauer

Dauer

I am a worm in 

winter.  Inside–sickly-

sweet sap for blood. It’s 

embalming fluid, it shuts me 

down.

My voice is brittle, my

hair is brittle, I am 

prone to cracking.  

Fragility is damned and

beautiful.  I speak my

brittle voice as if

from behind a layer of 

glassine, or glass.  

My heart pumps 

slow and heavily,

driving the winter 

sap through my body.

 Something

heavy lies resigned in

my veins.  

    On the window-

panes, chrystals waltz

slowly, accumulating

stasis.  I am the inside of a 

cell in a whale’s blubber.  I am 

someplace so deep in the

ocean that light has to 

work to get there.

I shiver, ice  is in my bones, slowing

time for me.  I can see through the 

amber on my coffin, and I am fighting the

encroaching chill.

There are songs that 

come from within ice,

there are long seasons

that sing to the body, that

wrap it tight, like pagan 

gods.  

My new residence is

   Chronos’ coffin, 

wrapped in capillaries

of frost.

    Ice gods have

no mercy, their fragility

is an infection, diffusing 

outward from the axis mundi.

More brittle than angry,

their Midas touch turns

flesh to glass and 

tin, turns irises purple-

grey.  The silver in 

me reacts to light, 

needs to be washed and 

affixed, angrily begging to be

burned in acid.

Freezing a thing preserves it, at the

cost of life.  A photograph needs a

victim.  A taxidermied bear loses its

grandeur, becomes harmless.  I lose

my energy, one electron at a time.  Memories

calcify.

    Enduring is a

function of metabolism.

An infant or a humming-

bird thrum a spring

music with their 

hearts and wings.  

I sing icebergs

creaking, my vision 

fogged like frosted

glass.

(Dauer, German for “enduring”, is a hypometabolic state found in some animals such as nematodes.  Robert Naviaux, an expert in mitochondrial and metabolic diseases, found strong similarities between ME/CFS patients and animals in dauer. Info here: https://www.pnas.org/content/113/37/E5472 )


More art, moving pictures and music related to mold avoidance and ME/CFS

we are canaries in the coal mine, or we are sentinels–biological or ecological early warning systems for systemic disasters.

Coping with that may involve formal religious faith for some, it may Involve consuming or making art for others. I continue to present some of the things I think are related to ME/CFS , toxin /mold illness, sickness and healing and death…

grouper (liz Harris) is one of my favorite musicians.

Sat Apr 04, 2020 11:30 amI dont listen to music much since I’ve been most ill bc of sound sensitivity. Before one and a half years ago I listened to a ton of music bc I used to be a musician and while I was moderately ill it was a way to keep myself sane

I think that the musician Grouper is probably really great ambient deep ecology ethereal music , the type of music that I aspire to listen to while recovered and living in my cabin or trailer in wyoming , or the yukon, or a canyon in utah. I haven’t listened in awhile but recommend “Wide”, “Dragging a dead deer up a hill” and “headache” by grouper

groupers music totally makes me imagine living deep in a temperate forest , or even a desert , and healing in the air slowly. And it makes me think of elves in the forests and groves that elves tend to frequent.

the idea of a dense, protective and perhaps even healing forest appeals to me a lot, and I think a lot of du weldenvarden , the forest from the fantasy novels Of the Inheritance Cycle , by Christopher paolini (starting with Eragon)

tags: hypostition, cryochronology, Ron davis, Dauer, Robert Naviaux, Stasis, metabolic trap, mold avoidance


Some assorted pieces of art that will help make sense of this

first reformed

12 monkeys

fallout new Vegas

stalker (prescience of movie wrt post apocalypse, Chernobyl etc)

solaris (alterity of environment and futility of war against environment constituted as the Other–spits back that which is thrown at it)

Ishmael and the Story of B

Desert Solitaire

Paradise lost (haven’t finished), Inferno

Answer to Job (but haven’t read it all) by Jung

Princess Mononoke

Miyazaki is great at intertwining theological and ecological/scientific problems. Nausicaa approaches complex second order ecological toxin effects in a way I dont think any other piece of artistic work has, all while being a compelling thriller that is a visual fea(s)t.

Okay… I’m not doing well bc of worsened pain and trouble typing, so I’ll just try and rest and adapt… although I hate it and prefer raging against the dying of the light , etc etc…however I’ll continue to update this post.

<button type="button">pain</button>

Try all of the buttons.  I dont know code but I’m trying them out.  Maybe they’ll help navigate somewhere relevant. 

Part of this website is a protest, or amalgamations of various protests beyond mine. Part of it is a simple piece of history, record, and part of it is about science. and these are all related. I dont know what we’d find in my neck if we opened it up and took a connective tissue biopsy (we will know soon), but I do know that what we’d be doing is similar to both excavating an archeological site, and taking a sample of earth from a site in the Amazon. Its history, science, or maybe even art if our dying world has the luxury for that as well.

Currently my body is forcing me to slow down with my musings. and to some extent also forcing me to slow down even with simple copy and paste tasks. But I have a sisyphean task , I think. To document this all, until someone notices and cares, someone who has more power than me. someone with as much or more power than Walter Koroshetz. Maybe to get the money to get better and continue trying bleeding edge treatments all at once, id have to be famous or wealthy, things that otherwise haven’t been the main object of my life. To be an agent of history instead of being acted on not just by my environment, but by the people who triggered the butterfly effect that affected that environment that affects me.

ME/CFS, ART, ME/CFS ART, nanoparticles, fungal spores, miyazaki, disability art, chryochronology, craniocervical instability, lake tahoe, incline village outbreak, hunter x hunter, anime, nanoparticles, Edward abbey, open Medicine foundation, deep ecology)